Note: This is a reflection on living with a loved one who chronically wishes to die. There are no graphic details.
It has been so very hard to write these past months since my son, Blake, was released from his second hospitalization. I’m pretty sure I’ve been on autopilot. I don’t experience joy in the same way I used to. I find myself drifting off when I’m with a group (the few occasions that I am now). I am delighted to hear what is going on with my friends’ children: the upcoming weddings, the new jobs, starting a new education, traveling. Yet there is just this sadness in me that lingers. It touches everything, leaving its residue. I don’t take new patients into my OCD and anxiety psychology practice. I’m sure many people think that I just have a long waitlist. The truth is, it would be unethical for me to take on more when I’m struggling myself.
Yes, I am depressed. I know it. Yes. I’m in treatment myself. Have been for a long time. Thank goodness for therapy. It sustains me through the ups and downs. It keeps me moving on through the unknown.
I’m struggling whether to tell you today about the sense of abandonment or what I’ve finally come to that is providing me a measure of peace. Probably the latter today. With the abandonment part comes a lot of anger and I can’t find it in me today. No. I’ll tell you instead about the peace.
A couple months ago we ventured away for a family overnight. In the bathroom as I prepared for bed, I wondered to myself how one actually copes with having a chronically suicidal loved one. What is one to do when their loved one is chronically in emotional pain, shares about it frequently, and could leave this world at any moment?
“How do I keep going? How does one come to terms with this?”
My therapist hadn’t been able to answer that question when I’d asked her about it the previous week. It felt to me like an unending grief – like I was watching my 22-year-old son die from a life threatening illness and I could do nothing to save him. Part of me wanted him to “snap out of it,” though I knew that was unrealistic, even unfair to suggest.
Just then, in the hotel bathroom, it washed over me that, indeed, my son did have a potentially life threatening illness – it just wasn’t a physical one.
“So how do people manage when someone they love dearly has an illness that may end their life at any time?” I wondered, thinking of a particular colleague whose spouse was painfully terminally ill.
I rolled into bed, considering this. It occurred to me that, when you love someone who is seriously ill, you stay with them through their pain. You empathize with it as much as you can; you don’t discount it or disregard it or blame them for it. You accept that it is part of their illness. And while you desperately do not want to lose them, you accept that death may be part of the equation at any time. If that’s the case, you appreciate each and every positive moment together that you can, knowing that it may be brief. And while you don’t want to lose them, you respect their right to choose what interventions are acceptable to them.
When I awoke the next morning, I recognized that I had a new perspective on living with my son. It is what guides me and helps me to keep moving through the unknown. My son’s illness is potentially life threatening. In fact, somehow I have fully and radically accepted that I may lose him at any time. I don’t want that, but I have no control over it. My job is to accept and hear his pain, no matter how difficult that is. I can hold hope for the best, while helping him pursue the treatments he is willing to accept. And, maybe most important of all, I can cherish the moments of joy that we have – and we do have them sometimes.
Somehow they are all the more precious.
*If you or someone you know is considering suicide, please consider reaching out to the National Suicide Prevention Lifeline at 800-273-8255, or the equivalent in your country.
This – or a variation of this – is the question I keep getting asked in the almost month since my young adult son, Blake, came home from his second hospitalization. Blake was hospitalized with severe depression after a recent spike in his Obsessive-Compulsive Disorder (OCD) and related intrusive thoughts. He made a plan to end his life, and he’d planned to carry it out. Yet, that is not where the story begins, nor is his release from the hospital where it ends. They are pieces in a long journey.
I can’t speak for my son and what it is like to be him. I can, however, speak as a mom who has watched her child suffer for a very long time. There have been twists and turns on this road over time and lots of things have contributed to where we are now as a family. The bottom line is that my son came to the point a while back where he decided that this world was not for him. He’s been clear about that with us. He lost hope somewhere along the line that he would ever feel better. And we have been living with this as a family for some time. His hospitalizations did not represent a sudden departure from the life we lived with him. They were just the most obvious signs to the outside world. To many, I guess it appeared we had a sudden crisis along the road and that the hospitalizations were about addressing that. Maybe they were. But they didn’t “fix” a problem; they just kept my son safe for a period of time. Maybe they even reinforced his view of himself as a failure.
So now people ask me, “Are things better?” or “Is he feeling better?” I understand that they care and that they are being kind. And I feel like I disappoint with my answer. Bluntly, the answer is, “No.” That’s not what I answer, though.
“It’s going to be a journey,” is what I say. That’s the truth. Simple. Pure. I don’t know what direction my son is going to go in. It kinda kills me as a mom to move through life knowing that my child, who I love dearly, believes that each day he is here is torture. But, this is not the end of the journey. Not now. I don’t know where it leads, only that it is.
Welcome to the surreal world of post-hospitalization for a mental health issue. Glad you could come. Suspend all disbelief at the door.
Seriously, this is a bizarre journey. Come along if you like. Today Blake had his first real appointment since he was released from the hospital. He met with a psychiatric service that was meant to help him continue with his medications until he connected with a new psychiatrist. I checked on him just after the video appointment was to begin. Hearing no sound coming from behind the door, I knocked to check in. No one had contacted him yet. He was sitting and waiting, almost willing someone to email him a Zoom link for his appointment which was supposed to have begun five minutes before. I coached him to call and he was given a way to connect and I left the room once more.
When he finished, several minutes later, he was more confused than ever. The wrong medication was prescribed and he had been told to go back to his previous psychiatrist and outpatient therapists. This is NOT what the hospital had told him to do. And, all importantly, there was no blood test ordered to check his Lithium levels (one of his new medications is Lithium, and he must have regular blood tests. In fact this was the most important reason for his appointment).
I recognized, after hearing of his experience, that I need to step in and advocate for my young adult son. He is scared and confused.
”In the hospital, they do everything but spoon feed you,” he noted. “Now I’m supposed to know how to manage everything and I don’t. It’s all my fault.”
“No. You’re not. And it’s not helpful to pile blame onto yourself,” I told him, gently. “This is confusing for Dad and I, too. We’ll figure this out together.”
I helped him call his psychiatrist, a man he’s seen only once before he was first hospitalized a month and a half ago, and helped him book an appointment. Thank goodness he had something within a couple days. I hung around while Blake completed a mass of online documentation and I provided moral support and assistance as he needed it. He got through it all.
Later, the pharmacy left a message. I’m pretty sure they refilled medications he is no longer taking. I haven’t even told him yet. He doesn’t need more confusion for the day.
Tomorrow, we celebrate his birthday. It can wait until after that. His birthday had been planned as his death day. Our plan is to help him avoid fulfilling that plan. He seems on board with that and has given us permission to commandeer the day with special surprises. Thank goodness for that. Perhaps we can have one day of delight – one day where the weirdness waits. It’ll be back on Friday, I’m sure.
Being a loved one of someone who has Obsessive-Compulsive Disorder is hard. It’s hard because you watch that person suffer, and, when you love someone, you don’t want them to suffer. Very commonly, when someone we love has OCD, we get caught up in doing things that don’t help. One way we do this is by accommodating. That is, we do things that OCD wants (e.g., washing our hands because maybe they touched something suspect, we reassure our loved one that of course the feared thing won’t happen, we do things our loved one is capable of doing themself so that their OCD doesn’t get triggered – the list goes on). Accommodation, although it feels loving, actually keeps our loved one stuck in the OCD cycle.* On the other end of the spectrum, but also problematic, is what I did with Blake the other day. I got into conflict with him over his OCD.
Yes. Yes. I did get into conflict with him. I was downright not very nice. I share this with you at the risk of being judged harshly, but I have a purpose for sharing it. I want to emphasize something for loved ones everywhere. Loving someone with OCD can present some challenges – and you will not always meet those challenges in the best way. You are human. You will mess up. I messed up the other day, and I am a psychologist who is an OCD specialist. I deal with these issues every single day of my professional life. I should know better. And I can admit that this is hard.
So, here’s what happened. Blake and I went grocery shopping. He was not thrilled to go. I actually didn’t give him a choice. He’s been in the house almost nonstop and I thought it was important for him to interact in the world for a brief bit. With our masks donned, we moved through the medium-sized store as I grabbed some bread and produce. Blake was clearly anxious about the experience, although he did stop briefly to say hello to an employee he recognized from his volunteer work. When we got home, I still had one more errand to run. Blake was to take the two bags of groceries into the house. He walked around the back of the car and lifted the hatch.
“I don’t know what to do about this, Mom. Can you help?”
I got out of the car to see what the problem was. One of the bags had fallen over and the apples inside it were now lying on the car liner. Without thinking much of it, I picked up the apples and placed them with their mates in the bag. Blake seemed to recoil. I knew right away what it was. OCD was saying all the apples were contaminated. I felt frustration rising in me; that should have been my sign to stay quiet and leave. Instead, I confronted Blake.
“You’re upset about the apples, aren’t you?”
“Well, I just don’t know what to do with them now.”
“Blake, we wash our produce before we eat it…”
“But they were in the back of the car…”
“Apples grow outdoors. They fall on the ground before they get to the store. They touch all sorts of things. You’re not going to eat these now, are you?”
“No. Probably not.”
Nice, huh? Great example of a loving exchange between mother and son. And the mother is an OCD specialist! So, it went on for just a bit more and ended up with me saying something really brilliantly supportive like, “That sounds like such a hard way to live, honey,” before I drove off, leaving Blake with the grocery bags.
Within moments, I knew I’d been out of line. I’d been unkind. Airing my frustration at my already-anxious son was not going to make anything better. What he did or did not plan to do with the apples was not my problem. It was his job to either challenge his OCD and eat them or to miss out on a favorite fruit. As I drove I crafted my apology in my head. I would write it as soon as I was parked, but before I even arrived at my destination I received a text from Blake.
“Hey Mom. Sorry for how I responded. I’m tired and I’m panicking and I felt like I just couldn’t deal with the situation. I went with what made me most comfortable in the moment.“
Tears stung my eyes and rolled down my cheek.
“Hi Blake. Thank you for the text. I was just about to text you, too. I feel terrible. I cornered you about the apples and that was wrong. I am so sorry.“
We spoke some more when I got home and each acknowledged our part. We recognized areas where we are each a work in progress. Will I be perfect now and never mess up again? No. I will absolutely mess up again. What I refuse to do is to beat myself up over it as I have done so many times in the past. It doesn’t help me and it doesn’t help Blake, who worries about me when he can see I’m doing that. Instead, I can strive to improve. I can acknowledge that I am flawed. I can recognize that growing signs of frustration in me are not imperatives that I act or speak, but signs to step back and evaluate. And I can remember that when Blake is appearing anxious that he is not going to be able to take feedback from me; it’s best I wait. We can learn and grow – together.
*Note regarding accommodation. Please, if you see yourself in this and recognize that you engage in accommodating your loved one’s OCD, refer to more information on the subject. Do not change and remove your accommodating behavior until you have consulted with your loved one, a professional, and/or professional resources that can teach you how to do this. One possible resource is the International OCD Foundation: https://iocdf.org/
*This is not meant to be advice; it is simply something I’m learning as our family navigates having a family member with suicidal ideation. If you are thinking about suicide or have a loved one who is struggling with thoughts of suicide, please call the National Suicide Prevention Lifeline at 1-800-273-8255 (In the United States. In other countries, please reach out to a similar service in your country).
The hubby and I began participating in therapy with a specialist from a suicide prevention center just a few weeks ago. Our son, Blake, had been sharing a good deal of suicidal thoughts with us and, since he was not interested in any ongoing treatment, we recognized we needed support ourselves. So far, we’ve done an intake meeting and two sessions. Although I’m a psychologist who specializes in treating anxiety and OCD, it’s a completely different story being a patient. I am learning, for sure, so I thought I’d share three nuggets I’ve gotten so far:
1. It’s not necessarily a bad thing that someone is talking about suicide.
Emphasis here is on “talking.” It was terrifying to me when Blake shared the thoughts that go through his mind, how much he suffers, how much he thinks of dying. I became alarmed at the very presence of these thoughts. However, our therapist (and others) have told me that it is actually a positive thing that Blake is talking about his thoughts. Talking and sharing are attempts to reach out and connect with others. This is a better thing than keeping these thoughts all to oneself – and not connecting with others.
2. It’s important to listen, not try to problem solve.
Many times when Blake has shared his pain with us, the hubby and I have worked to problem solve with him about ways to cope. We’ve also tried to shine a light on the bright side of things that he may be overlooking. What I’ve learned is that the most important thing I can do when my son shares his thoughts and feelings – even though they contain very dark and frightening content – is to listen and accept them as his. It is not my job to problem solve. That’s not where he’s at; he’s in sharing mode and he simply wants to be heard. As far as pointing out the bright side, our therapist noted that, for someone who is not ready for that, it’s kind of like shining a light in the eyes of someone who has been sitting in the dark. It’s going to be jarring and unappreciated. So, I’ve been working on listening and simply hearing.
3. An increasing number of conversations about suicidal ideation does not necessarily mean the person is about to act.
In our last session, I noted to our therapist that the freqency of conversations seemed to be going up. Our son was having more conversations with us about his pain and his thoughts of death. He wasn’t sharing intent to act, he was just sharing more often. It was emotionally exhausting, at times, and I was concerned what it meant. The therapist reminded me that we’ve shifted our conversations from problem-solving and pointing out the bright side to actually just listening and accepting. She noted that the increased frequency may simply mean it’s become more safe to share and that, when a person feels like they will be heard, they’ll take the opportunity to talk more often about what may be going on in their head. So, although it feels scary to me to be hearing my son’s thoughts more, it may just be that he feels more accepted in voicing them now than he did in the past.
We still have a way to go on this journey, and we have to listen to our son to ensure we are not missing signs of intent to harm himself. On the way, I am learning, and I hope our experience can help others.
*If you are thinking about suicide or have a loved one who is struggling with thoughts of suicide, please call the National Suicide Prevention Lifeline at 1-800-273-8255 (In the United States. In other countries, please reach out to a similar service in your country).
“I called the suicide hotline the other night.”
Blake casually drops this line as he and I sit lazily on the patio chairs and cushions in our yard. I do everything in my power to keep myself from reacting too strongly. I want to encourage him to keep talking, not shut him up with my own anxiety.
“You did?” I ask. “When was that?”
“Saturday night. I just couldn’t sleep. I couldn’t stop thinking about what a failure I am and I thought, ‘Maybe I’ll check this out.’ Honestly, I expected it to be a waste of time, but I’m actually glad I called.”
“I’m so glad to hear you called,” I say. “You must have been feeling pretty awful to reach out.”
“Yeah. I tried the text line first. But there were a lot of people ahead of me. I waited over half an hour. I decided I’d try the actual phone line because the service suggested it as an option. I thought I’d wait even longer, but there was someone on the phone with me in about three minutes.”
He pauses a bit, then he continues, “I thought it would feel stupid, but I have to say, it felt so good to tell a stranger how awful I feel. I told them about stuff that I’ve never told anyone else. I felt like what I’m so upset over is so petty, but the person on the other end of the line said, ‘That sounds so hard.’ It felt so good to hear that.”
We go on to talk about more of the particulars. My young adult son shares how he struggles to decide if he should live or if he should die. I tell him how courageous he is for reaching out, and for being honest with me now. But afterward I am hurting so much. I want to cry and feel the relief of deep, cleansing sobs, but the tears won’t come.
It’s well after midnight and my husband is asleep. I turn to the internet. I’m not sure what I’m looking for, but my son (my beautiful son) – the one I carried when he cried as an infant, explored the world with, delighted in each new step he took, soothed through huge spikes of anxiety and OCD triggers, and championed through his many brave steps – frequently feels that his life is not worth living and that he is not worth the effort of saving. I’m looking for something to help me help him see that it IS worth it. I feel desperation…and then I realize – it’s not my choice to make. It is his life and I cannot coax, cajole, or convince him to stay here. It is selfish of me to do so because, while I’m thinking of him, moreso I’m thinking of my own pain.
And that is when I realize that I am the one who needs help. I have to take care of me right now. It’s not about saving him. Yes, he could use help and support when he chooses it. But right now it’s about taking care of me so that I can live with a family member who I love fiercely and who is frequently contemplating suicide. That is a lot to navigate alone and, until now, I’ve pretty much done just that.
Maybe it’s because I’m a psychologist and I think I’m supposed to know how to handle suicidal thoughts, but I suspect that it is also about being a mom. As parents, we are supposed to take care of our children. We worry about them from the moment they are conceived until we draw our last breath. When they struggle, we look to get them help. We forget that we must be in good shape to be a support.
The next day, I call the suicide hotline myself. It had never occured to me that I could call the hotline as the parent of someone who was dealing with thoughts of suicide. As much as it sucked to make that call, it felt so good to be heard and held by another. That call led me to reach out to a suicide prevention center and today, in less than an hour, I will have my first consultation session with a specialist. It’s not for Blake. It’s for me – so I can learn how to take care of myself. I’m nervously optimistic. I’ve lived with my son’s suicidal thoughts for so long, never considering how I was doing. Let’s see where this journey leads.
As I finished my lunch that Friday afternoon, I had no idea what turn the day would suddenly take, nor did I realize the strength and capability my son, Blake, would demonstrate…
The house phone rings at around half past one. I’m seated at the kitchen table enjoying a quiet moment before I transition into an afternoon of work. Most calls to this phone are sales calls, so I resolve not to answer and opt instead to screen the call. No one leaves a message. Seconds later, my mobile phone rings. It’s my mom. I pick up at once.
Right away I can tell something is not right. I brace myself for what is to come. Someone must be injured or having a health crisis. I’m wrong.
“Daddy died,” my mom says. She cries and she sounds confused. I, on the other hand, go into automatic.
“Tell me where you are.”
It takes her a moment to figure it out. I can hear a voice in the background telling her where she is. She repeats this back to me, not fully understanding it, just parroting what she’s heard. I tell her I’m on my way.
“They want to know what to do with his body,” she says. “I don’t know what to do.”
“I know what to do,” I say, though I don’t exactly know how to do this. “I’ll be there as soon as I can.”
When I hang up the phone, Blake looks bewildered. I tell him what happened. I tell him I need him to come with me; I need his help. I see him slip into the same mode I’m already in.
“Do You Want Me to Drive?”
My nineteen-year-old son, the one who struggles to get out of bed because depression tells him there’s no good reason to get out, offers to drive me to his grandmother. He hates to drive, but he’s ready to help.
“What I really need you to do is to make phone calls while I focus on driving,” I say. “I’m not ready to talk to anybody, but I can tell you who we need to call.”
As we drive, I issue commands. Call Dad. Call your brother. Call the religious leader. Call Dad’s parents. Blake doesn’t miss a beat. He calls them all, although he’s uncertain about what to say. No, we don’t know what happened. Umm…my grandpa died. Please call me back.
“Where are you?” implores my mom. She’s on the phone as I’m pulling into the urgent care parking lot. “You don’t need to come.”
“I’m here and I’m coming in,” I say kindly yet assertively. I assume she’s in shock. Moments later I’m in an exam room where my mother is sitting alone, door shut, looking lost and confused. Blake watches as I wrap my arms around her and she allows the tears to flow. Blake joins in the hug.
“He shouldn’t have died,” she says. “He wasn’t that sick.”
“What happened?” I ask. I hadn’t been aware that my father wasn’t feeling well. She unpacks the tale of the past three days. Severe abdominal pain. Unable to eat. Lots of time in the bathroom. Finally forcing him to come to urgent care. Dressing him. Leaving to get the identification that he forgot at home while he heads to the restroom. Coming back to discover he’s never left the restroom. Calling for assistance. Watching helplessly as he’s moved to the floor and CPR is begun. Being told by the doctor how sorry he is for her loss. Her loss? He’s not that sick. Wait. What?
There’s a knock on the exam room door. It’s a sheriff’s deputy. He wants to know what we would like to do with the body – my dad’s body. He takes me into another room to give me details. He realizes my father had no plans for his death. He’s taken it upon himself to read Yelp reviews for mortuaries. He points me to one with five stars. I almost laugh. No. It’s okay. I know what mortuary to use. I don’t need to call the five-star-Yelp-reviewed mortuary.
I talk to the religious leader. I talk to the mortuary. I talk more to the deputy. My hubby arrives. I hold my mom. I ask the deputy to see my dad. I need to know that this is real. He makes me promise I won’t scream – I guess because this is still a working urgent care office and there are people in the waiting room. Where are the staff of the urgent care? Oh there they are – looking wide-eyed and dazed, unable to make eye contact with me.
And then I’m in the room with my dad. There’s a sheet pulled over him. I only see an arm hanging down the side of the gurney he is on. The deputy stands in the room watching me, gently, but there to make sure nothing is disturbed and ready to intervene if I suddenly lose it all. I gently pull down the sheet, just below his neck. And it’s him, looking just like himself, like he’s in a daze, his eyes open, his lips slightly parted. Suddenly I feel like the adult in the room. My dad is helpless. I am strong. My dad cannot do for himself. I must do for him. It is my job to make sure that the vessel that held him these 76 years is properly cared for.
“Oh, Dad,” I say out loud, and I touch his hand, hold it. It is cold to the touch like I’ve always heard, yet I’m still surprised how quickly our warm-blooded bodies cool to room temperature and even feel chilled. I plant a kiss on his forehead and I study him for a moment. My sister and brother cannot be here and I feel the responsibility to bear witness.
The deputy follows me across the office, by the urgent care staff, still with their wide eyes. As I’m about to re-enter the room my mom is in, I catch a glimpse of Blake walking down the hallway deep in conversation with someone. He’s relating the details. I watch him do this again and again in the three hours we wait for the mortuary transport service to arrive. My heart wells with love and respect. My beautiful son is not the young man with depression and Obsessive-Compulsive Disorder. He is the capable young adult who places calls to family and friends, close and distant. He is the one who keeps watch over me throughout the drive and wait at the urgent care and, later, the one who takes command of my car when I abandon it to drive my mother home. I see all that he may grow to be and I make note of it.
Finally, the transport workers arrive. They drape an ornate cover over my father. It makes the contents of the gurney they must now roll out of the building appear less stark. They roll him out of the exam room, through the bullpen area of the office (staff still wide-eyed and unspeaking), and out through the waiting room with its patients sitting in the neatly arranged chairs. It is awkwardly silent. No one says anything to us.
“That can’t be good for business,” my hubby says in a good- natured way to the office manager, in an attempt to break up the silence. In the moment, I’m the only one who sees the humor in this. I go back to get my mom.
Late that evening, exhausted, I thank Blake for all he’s done today. Thank you for looking after me and making sure we got to the urgent care office safely. Thank you for looking after Grandma. Thank you for making and taking all those phone calls. Thank you for getting my car to Grandma’s house.
A few days later, we leave the house early to drive to my dad’s funeral and burial. Blake is up and ready to go. He notes how he struggled to get out of bed this morning, but then he remembered his grandpa. Grandpa struggled to get out of bed himself most of the time, notes Blake. In his honor, and because Grandpa could not get out of bed anymore, Blake chose to do the difficult thing – he got out of bed. In that moment, I am so filled with love for my boy.
This post is in memory of my father, who struggled with substance abuse, with depression, with body focused repetitive behaviors (BFRB’s), and with undiagnosed Obsessive-Compulsive Disorder (OCD) for as long as I knew him. He gave life to three human beings – two of whom I am blessed to call my brother and sister. Dad, I hope your legacy is that we learn, we grow, and that we help ourselves and others to have hope and to seek help when it is needed. Blake chose the title of this post, “All Good Things…,” noting the dual symbolism of all good things coming to an end, as well as the fact that it is the title of the last episode of “Star Trek: The Next Generation.” His grandpa, my dad, was a devoted longtime “Star Trek” fan. He taught me to deeply appreciate science fiction, which I do to this day – as well as the occasional B horror film.
This morning Blake is up early, even earlier than I am. He is eating breakfast when I come downstairs.
“He’s stayed up all night again,” I automatically think. To be perfectly honest, it’s a fair assumption. After all, he didn’t get out of bed until around 9 pm last night. His dad and I went to his room several times during the day encouraging him to get out of bed. It’s a familiar pattern – one that leaves me with a sense of hopelessness that sometimes spreads within me.
“I will,” was all we got – and then he plodded downstairs about an hour before the hubby and I went to sleep.
Blake heads upstairs – to go to bed, I assume – and I offer to make him a cup of coffee. To my surprise, he answers, “Yes.”
When I enter his room he is sitting in front of the space heater. I hand him the warm mug, plant a kiss on his cheek, and shut the door.
“Mom?” I hear from behind the door. I open it back up. “I didn’t stay awake all night. I actually went to bed a little after you and Dad.” He goes on to explain to me how it is possible to go back to sleep after sleeping nearly twenty-four hours.
“I’m happy,” he says – words I haven’t heard from him in some time. In fact, I can’t remember when he’s said that. “I got up two days with my alarm this week,” he notes, “and while it might not have been in a row, it’s more than I’ve gotten up on my own in this entire month.”
He goes on to show me words and symbols of motivation he’s written on a white board near his bed. On that board are the letters “INV.” He wants me to see what they stand for and motions me over to his laptop. “Invictus” is a poem written in the 1800’s by William Ernest Henley. For those who do not know the poem or the poet (I didn’t, though perhaps I should have), Henley suffered periods of extreme pain in his early years due to tuberculosis of the bone. He saw one of his legs amputated below the knee due to this. And, yet, his “maimed strength and masterfulness” inspired his friend, Robert Louis Stevenson, to create the character, Long John Silver.
Blake shares the poem with me, noting that he reads it to himself nightly. He identifies with not only the words of the poem, but with Henley, himself. After I read it, I cry and we hug. I am leaving the words to the poem below:
by William Ernest Henley
Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.
In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.
Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.
It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate,
I am the captain of my soul.
I haven’t written much lately about Blake’s OCD. Though it’s been in a “waxing” period for some time now, there are still “rules” Blake follows all day every day. This was a moment we had last week.
Blake is helping me make my bed and we are chatting as we work. The only problem is, our cat isn’t cooperating. He insists on walking all over the blankets and sheets, making it nearly impossible to move or straighten anything without difficulty.
Impatient with our furry companion, Blake picks up a pillow and starts swatting at the cat. He’s not actually hitting him, just trying to encourage him to move off the bed. He swats repeatedly, but it’s a fruitless maneuver. The cat only moves a few feet so that Blake has to move to another part of the king size bed to reach him.
I watch this scene with interest. It’s a pretty ineffective technique for moving a cat who is determined to stay put, yet Blake continues to try to use it.
“How about if you actually give him a little nudge with your hand, honey? Or maybe pick him up and put him on the floor?” I finally ask.
“Then I’d have to go wash my hands and I’m trying to wash my hands less,” he answers.
I don’t say anything. My silence obviously speaks to Blake who asks me, “That’s not unusual, is it? People wash their hands when they touch their pets, right? Right?”
“Um…that’s not what most people do. I mean, most people don’t run to wash their hands immediately after they touch their pets.”
“No. They don’t.”
“Ew. I don’t think that would be very uncomfortable.”
“Okay,” I say.
“Do you think I’m wrong?”
“Blake, you asked if other people wash their hands when they touch their pets. I answered you that most people don’t.”
“But am I wrong?” he asks.
“Only you can decide that, honey.”
“I don’t like to feel uncomfortable,” he answers.
“I know,” I say kindly. “Maybe, if you wanted to, you could expand the limits of what makes you uncomfortable by just waiting a tiny bit longer to wash after you touch our pets.”
“Thank you, mom,” he says.
That’s my signal that the message is received and he’s done with the conversation. Yet, this is the first time I can ever recall that Blake is questioning his behavior. He’s always just asserted that he is the way he is and that he thinks he is right. Today he is questioning whether his rules about what’s contaminated are in keeping with what others do. I don’t know that it means anything…but maybe it does.
Blake has been home now for just over two months. It’s been nice having him home. He’s been more self-reflective and more open to sharing. It’s also been a relief to know he’s eating and taking his medication more regularly. The hubby and I have been able to be calmer with him than before and less impatient with him in many ways. Yet, at the same time, things are still so uncertain with him and it’s tough to know what ways things will go.
He wants to be a writer and he spends his days working on a book he’d love to publish. Some days he write a lot. Other days – not so much. The topic of his book is a secret. I only know that it is a work of fiction, maybe even sci-fi. He ponders whether he should return to school at some point. And sometimes he’s very sad and lonely.
Recently, when he was feeling very sad, he shared that the only things he really looks forward to are eating and sitting in front of his space heater. I reminded him of how, a month ago, he enjoyed playing video games with his brother and a friend.
“I think that you’re actually a social guy and that it’s important for you to get out of the house and be with people on a regular basis.”
“But what would I do?” he asked.
“Maybe apply for a volunteer position where you’re required to show up at the same time every week?”
With a little more talk, he agreed to try. He reached out, with my help, to several organizations in our community and started a weekly position with our local food pantry. For the past three weekends, he’s ridden in the big truck with the driver, picking up donations from local grocery stores. It’s heavy lifting work and is probably good for his mood. He and his driver sound like an odd pair, yet Blake has taken to this young man (who is about 10 years older than him). Blake has even learned to appreciate a new music genre: Hick Hop! He actually looks forward to going each time.
In addition, Blake has started a blog. Again, it was at my urging, but he joyfully wrote his first post. It’s a humor blog and that first post was pretty hysterical to all of us. We’ll see where it goes. The hubby and I hope that, little by little, Blake will build up momentum to living in the world and taking more steps on his own.