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In light of my recent discharge, I thought this would be a good chance to allow Kathryn to share her experience of me being hospitalized.  Because Kathryn has seen the whole journey from beginning to now, she has a unique perspective to share. The following is her reflections on the questions that I have asked her.

Q: What different types of treatment were used (pharmaceutical, spiritual care, talk therapy, ECT), and was one emphasized more heavily than the others?

A: Ashley’s hospitalization this summer has been very different than all prior hospitalizations for this very reason. During past hospitalizations, psychiatrists have eagerly explored pharmaceutical treatments and very little else. This time around I noticed that the treatment Ashley was offered was quite varied. Spiritual care, pharmaceutical treatment, electroconvulsive therapy, art and music therapy, physical activity and easy access to fresh air and sunlight have all encouraged healing during this journey. I also sensed the psychiatrist’s determination to help Ashley navigate the darkness which was very encouraging to me, as this has not always been the case with prior hospitalizations.

Q: Do you feel the hospital is structured in a way that promotes healing, or perpetuates illness?

A: This is a difficult question to answer. Overall, I believe that the hospital Ashley was admitted to this summer does indeed promote healing. The reason why this is difficult to answer is because there have definitely been times in which I have disagreed with decisions that have been made, one of which being the stretch of three days when I was not allowed to see Ashley, simply because the psychiatrist felt it would be best for me not to visit. For patients who are actively willing and able to participate in their recovery, I believe that the hospital does promote healing by encouraging patients to have visitors and allowing them go out on passes, whether simply off of the ward to go to the gym or leisure lounge within the hospital or to go home and participate in ‘real life’ activities. For patients who are unwilling or perhaps not even yet able to understand how to actively participate in their recovery, the hospital feels like a revolving door. During the summer I have seen many patients be discharged and then shortly after, be readmitted.  It is a heartbreaking thing to see, but I do believe that it is safer to navigate the darkest of times within reach of medical professionals than all alone at home.

Q: How did you react when the doctor first suggested electroconvulsive therapy for Ashley?

A: I had a brief moment in which I was completely terrified but recognized that it was a fear of the unknown more than fear of the treatment itself, because I knew very little about ECT. The more we learned about ECT and its potential benefits from the medical staff, the more hopeful I became.

Q: What was it like seeing Ashley go through ECT twice a week?

A: On the day of Ashley’s first treatment, my stomach was in knots but I was relieved to be able to be by Ashley’s side the entire time. The moment Ashley drifted off under anaesthesia I was paralyzed with panic, unsure of what to expect next. The procedure itself is quite short – only about two or three minutes from start to finish but the prep and recovery take hours. As I observed Ashley fall asleep, I almost felt like I was in a dream where something terrible was about to happen and everyone else was totally unaware and going about their business. My eyes were fixed to the monitor which displayed her vital signs. The anesthesiologist casually administered the second drug which was a muscle relaxant and all of the staff around Ashley watched as her breathing slowed down to a turtle’s pace. Then the anesthesiologist moved to the head of the bed and began taking over for Ashley’s lungs, pumping oxygen into her using the handheld ventilator. After about one minute, a bite guard was inserted into her mouth and the staff all looked at each other and said “Ok go ahead.” As the electricity entered Ashley’s brain, the muscles in her face tensed up and her toes curled up tighter than I could have imagined.  The staff then continued their chit chat and all I could think was “This is not normal! How can you be talking about your weekend when my wife is having a seizure!” At first, the seizure was quite noticeable and gradually faded until I could only see small twitches of her toes. Within about a minute, her body naturally stopped the seizure and they quickly unhooked the electrodes, took out the bite guard and moved the ECT machine over to the next patient’s bed. The anesthesiologist and one other nurse remained by Ashley’s side and continued ventilating until began breathing again on her own. Now THIS was the worst part of the whole procedure. Often Ashley awoke, gasping and choking for air, asking for help and saying she couldn’t breathe. It was during these moments that I felt completely useless, not knowing what to do other than encourage her to breathe slowly and remind her that it will be easier to breathe momentarily. Although it was stressful to witness, I am so grateful that I was able to be by Ashley’s side through each and every treatment, offering her support and love and even a few laughs during her most vulnerable moments. And thankfully, she has no memory of the difficult moments waking up after her treatments.

Q: Do you think ECT was effective? In what way?

A: I absolutely believe that ECT has had a positive effect on Ashley’s journey towards health. It wasn’t until the last few treatments that I truly began to notice lasting changes. I started to notice Ashley smiling and laughing more. I would come to spend time with her at the hospital and our conversations would be focused more on hope and life rather than escape and darkness. Early on in her series of ECT treatments, she asked her psychiatrist how she would know if ECT was working and he laughed and said “You’ll just know.” It was at Ashley’s eleventh ECT treatment that I really felt like I could see this dark cloud lifting. After the doctor had said “You’ll just know” Ashley was quite skeptical and desired more concrete guidelines to gauge her progress. It was after her eleventh treatment, as she was recovering, that she said “I don’t know how to explain it, but I feel like it’s working. I just feel better.”

Q: What was the hardest part of having Ashley in the hospital for three months?

A: The loneliness was the most difficult part for me. Although we have only been together for four years, I don’t even remember my life before Ashley. I really feel like it wasn’t until I met Ashley that I was truly alive, so feeling so disconnected from her for so long was very difficult.

Q: What was the best part?

A: I wouldn’t say there was a ‘best part’ of Ashley’s hospitalization but the most positive things that came from the past three months are the people who have influenced her journey towards health and healing. There have been several patients and staff who we will always look back on with fondness and gratitude for making our lives richer.

Q: When were you most scared?

A: I was most scared when the dark cloud was at its darkest. When Ashley saw no hope, no light, not even a glimmer, when her illness was at its ugliest, that was when I was most scared.

Q: Did you notice a difference in how patients were treated based on their social, economic or educational background?

A: Unfortunately, I did notice a difference in how patients were treated based on different factors. Because Ashley is so intelligent, well educated and aware of her illness and how it manifests itself in her life, her psychiatrist and most nurses spoke to her candidly and honestly. Other patients who had come from different social, economic and educational backgrounds were not treated in the same way. Even patients with different diagnoses were treated differently depending on their ability to communicate.

Q: Did you feel staff treated you and Ashley differently because of your orientation or were you always welcomed as family and included in decisions that were being made about Ashley’s treatment?

A: I made my love for Ashley and my eagerness to do anything I could to help Ashley journey toward wellness apparent to all of the staff at the hospital right from the beginning. I came to visit Ashley once, twice, sometimes even three times a day and I always got the sense that the staff were happy to see me come and spend time with Ashley, comforting her and encouraging her to look towards tomorrow with hope. The nurses always kept me informed when Ashley was unable to contact me and I was absolutely always included in discussions about Ashley’s treatment goals and objectives. Occasionally the nurses would even turn to me and ask my advice on how we normally navigate certain situations at home and I would have a chance to offer my opinion on how different circumstances can trigger emotions and reactions when Ashley is most vulnerable. In those moments I truly felt respected and knew that my orientation didn’t matter, they simply saw me as a loving spouse trying to be as loving and supportive as possible.

Q: What “blessings in disguise” did you and Ashley experience because of her hospitalization?

A: Being able to be by Ashley’s side through her ECT treatments was definitely a blessing in disguise. No matter how difficult it would have been, I still would have gone to each and every treatment, but not very many patients had loved ones there for support during this process, which helped me realize how lucky we are to have one another.

Q: What signs have you seen that support Ashley being ready to leave the hospital?

A: Ashley’s general eagerness to get outside, experience what is left of summer and ponder the future and all of the great things it holds in store for us are all signs that scream “I’m ready!”

Q: How do you feel about Ashley coming home?

A: I’m so excited. I’m excited even about the mundane things like doing extra dishes and making bigger meals because it means Ashley is alive and home and ready for the next part of our journey. And it also means that I’m not the only one that has to scoop the cat litter.

Q: Has this summer changed the dynamic of your relationship with Ashley?

A: It hasn’t changed the dynamic of our relationship one bit. If anything it has strengthened our marriage. I always want Ashley to know that I made a commitment to her that I do not take lightly. I have promised to choose her each and every day, in health AND in sickness and I want to live out that commitment in every action and word. She is not her illness, I see far far deeper than that.

Q: What are some of the funniest things that Ashley said during ECT treatments?

A: After the sometimes painful transition from breathing via ventilator to breathing on her own, Ashley would have some comical things to say while still heavily sedated. Two of the funny things she said were:

– “My insides feel velvety.” (quoting Phil from an episode of Modern Family that Ashley and I had watched the night before)

– The recovery nurse said “It looks like she is becoming more alert now” and Ashley perked her eyes wide open and said “TIM HORTONS!? Is that what we’re chatting about?”

– Immediately after waking up from ECT one day Ashley complained of stomach pain and the nurse promptly went and got some anti nausea medication to administer. When she returned, Ashley asked what she was doing and the nurse said she was hooking up some medication to her IV to help her stomach feel less queasy. Ashley looked puzzled, obviously having forgotten that she had complained about her stomach hurting just moments ago and shrugged her shoulders and said “OK, I guess so.”

 

After three months, my stay at the psychiatric hospital is coming to an end. Today I packed up my bags, shook hands with the staff (a few got a little teary eyed) and said goodbye to the nurses and doctors that have been my strength and support over a very difficult summer.

This is both thrilling and terrifying. The ECT treatments have greatly affected my short-term memory and I feel as though I have slept through the entire summer. I don’t remember the anxiety and despair that led to impulsive, reckless behaviour. I don’t remember feeling the urge to swallow all my pills. I don’t remember the darkness.

Kathryn tells me about the events that have occurred. She tells me about the days we spent with her sisters at a cottage. She tells me about friends that have visited and fellow patients with whom I’ve connected.

The hospital has become our routine. The security staff know Kathryn by name and have her visitor badge ready when she arrives. The nursing staff know us well and many of them have become like friends. It has been comforting meeting with my psychiatrist everyday, knowing someone else is responsible for my care. As we begin to transition back to home life, the responsibility will fall on my shoulders, and to a lesser degree on Kathryn’s. This is a heavy weight to bare. ‘What ifs’ dance through my mind and discourage me. What if I get overwhelmed? What if my meds aren’t working the way they should? What if I lose control again?

What grounds does my doctor have for discharging me now? I understand why ECT has ended.  If it hasn’t worked at this point it’s not likely to work with continued treatment. But what evidence does my doctor have that suggests I’m ready to be on my own, at home, with Kathryn and all the stresses of daily life?

True, I’ve had a month of increased coping skills, less self-harm and ER visits. I’ve shown responsibility in completing tasks and following through on obligations. I’ve been home for extended periods of time and managed well. I’m sleeping well at home on a regular basis, and am showing an increased capacity for responsibility in my self-care.

But still, those ‘what ifs’ dance through my mind. And when they do all we can do in response is take a deep breath, ground ourselves in the present moment (ignoring fears about past or future events) and remember the skills that got us here.

Yesterday was World Suicide Prevention Day. I didn’t know. I was too busy living. I don’t mean that in a rude way, I think it’s a beautiful gift that I still have my life despite all the times I’ve come so close to suicide, and I intend to live it well. I spent the evening at a barbeque with Kathryn, her sisters, and one of their boyfriends. I spent the evening laughing, and watching Wheel of Fortune, and playing board games. I spent it celebrating our relationships.

Suicide is a topic that hits so close to my heart. I want to talk about it. I need to talk about it.

There are so many voices – so many blogs and memoirs and interviews, so many writers I look up to – sometimes I feel like my voice gets lost.  Sometimes I feel like my story is not important. It doesn’t need to be told. I’m only looking for attention.

These are lies. My story matters. It matters to Kathryn, and to my parents, and the rest of my family and friends. I need to tell my story because mental illness is a part of my life, and it matters.

When I was in grade eight, a friend of mine swallowed a bottle of Tylenol. The school’s secretary ended up finding out through another friend and an ambulance was called. I remember in the days that followed kids bullied her, threw Tylenol tablets at her, and told her to try killing herself again.

A short while later my closest friend showed me cuts she had made on her arm. Later, I’m not sure how long after, I sat on my bed with a little Swiss army knife and made the same marks on mine. I had to wear a long-sleeved shirt in gym class and kids made fun of me for it.

In university, I overdosed on a combination of sedating medication and alcohol. When I started feeling very dizzy and disoriented, I got scared and told one of my closest friends, who told his wife, who took me to the hospital. The family I was living with at the time was hurt that I had broken their trust and asked me to move out.

Shortly after Kathryn and I moved in together, she came home from work one day and found me unconscious. She has had to call an ambulance for me once more since then.

At a Dave Matthews Band concert earlier this summer, I seriously considered trying to swipe a police officer’s gun. In my delusional thinking, I believed I could end my life there at the concert. I spent the night in a Toronto hospital before being transported back to Hamilton for further treatment.

A person doesn’t die from suicide. They die from mental illness – depression, bipolar disorder, schizophrenia and a whole myriad of others. I read recently that we need to change our thinking from suicide being a crime that is committed by a person, to something that happens to them because of illness.

If you asked me to name one thing that has saved my life and prevented me from dying by suicide, I would say people. In every instance where I have tried to harm myself, someone has been there. Someone has saved me. Community resources, like Dialectical Behaviour Therapy, crisis support lines, emergency crisis shelters and hospitalization have all done their part to aid me in recovery, but it has been the friends and family, there for me in the most difficult of moments, who have kept me alive.

Above all, my beautiful niece, Britney. She has saved me more times than she will ever know. I convince myself that everyone else, even Kathryn, will be okay if I die. I deceive myself into believing they will heal. But I never want to introduce Britney to that pain. I never want her to struggle with self-harm and suicide the way I have.

But if she does, you can guarantee I’ll be there to support her and help her find the resources she needs to heal.

If you or someone you know is struggling with self-harm and suicide, please reach out.  Find someone who will listen.  There is help.  There is hope.

“Everyday may not be good, but there is something good in everyday.”

The hospital I’ve been staying at only recently opened.  It’s a new building that features numerous elements that reduce the stigma of mental illness and bring hope into the recovery process.  For example, the entire hospital features large windows that allow natural light to shine in.  The building that was previously being used as the hospital was extremely dark and artificially lit in comparison.  Another example is that each of the ground level units has access to a secure courtyard with patio tables and grassy patches, so that patients are able to spend time outside without the risks that would accompany leaving the building.  Natural light and time outdoors have both been shown to aid in the healing process, especially for illnesses like depression.

They held an open house when the hospital was first opened where the public was invited in to see this new space and one of the activities involved having people paint small ceramic tiles with water colour paints.  Hundreds of these were completed during the open house and they are now framed in groups of about twenty all through the corridors of the hospital.  Kathryn spotted the quote above on one of these tiles just the other day.  We must have passed it a dozen times or more in the last few months but for some reason this time it caught her eye.

The last two weeks or so has been very difficult for me at the hospital.  Many of the individuals I considered friends have been discharged and I haven’t found the same kind of connection with the new people that have come.  My hospital stay is dragging out into its third month, though I’m told it won’t be much longer. This is both exciting and terrifying.  The prospect of being discharged looms over me and leaves many anxious ‘what ifs’ in my mind.

It can also be challenging to assess whether the treatment I am receiving is effective.  A person with diabetes can check their blood sugar level and make the necessary adjustments to regulate it, but there is no test to measure depression or other mental illnesses.  Kathryn and I are left to wonder whether the medications and ECT are making a difference.

So when Kathryn spotted the quote about finding the good in everyday, it hit me as potent and so applicable to my current everyday life.  When we got back to my room, I asked Kathryn to help me to create a ‘Hope List’.  On it we wrote as many things as we could think of that we were looking forward to in the coming months.  The birth of my new niece ranks high on the list.  Coming home to be with Kathryn and my cats, and able to play my childhood piano (which my parents generously gave us as a housewarming gift) is also something I am greatly looking forward to.  We’re still able to spend some time at the cottage this summer and we are attending a donor conception support group meeting at the end of October.

Having these ‘hope for’s’ listed and visible helps me to face the fear that comes along with being discharged and resuming my normal life.  And it also reminds me that I can be proactive in my treatment and in my interactions with other patients on the unit.  I’ve made it my goal to learn one person’s name everyday while I am still here.  And although it’s still difficult to evaluate my progress towards recovery, I can see and acknowledge small improvements along the way.  This morning as I lay on the bed in the ECT treatment room awaiting my treatment, I wiggled and danced to the music in my headphones, much to Kathryn’s enjoyment.  When the doctor arrived and began his usual procedure, I was able to joke and be light hearted with him, which he remarked is a sign of my recovery.

I’ve noticed changes too in how I cope with the symptoms of Borderline Personality Disorder.  I will likely always have very intense emotions but the difficulty of having BPD comes from how I deal with those emotions.  Last night, my fears and anxieties got the better of me and I became extremely dysregulated.  I lay on my bed, wanting to die and wishing a nurse would come to check on me, but when none came, I went to the desk to ask for help.  The nurse was not particularly familiar with my coping strategies and although she tried, her support did little to improve my situation.  Kathryn has told me time and again that I can call her in these moments no matter the time of day or night and we can work through them together as a team.  No one knows me better than her and she knows my DBT skills almost as well as I do.

When she picked up the phone she could tell right away I was in distress.  It’s not always easy for me to accept her help in these moments but this time I discovered within myself an incredible willingness to use the skills I’ve been taught and to get through this difficult moment without making this situation worse by self harming or engaging in other destructive behaviour.  It is a new experience to be able to recognize the choice I have in these difficult moments instead of just reacting impulsively to the emotions.  And Kathryn was a star, she took the lead and directed me to exactly the skills I needed to use, and much to my surprise, the skills worked and I was able to get a good night of sleep.

I may not have quantitative evidence to assess my recovery, but I do know I’m taking steps in the right direction.  And although the uncertainties of the path before me cause anxiety, with Kathryn by my side, I know I can get through anything.  We can find the good in everyday.

Having Borderline Personality Disorder is kind of like being a sponge. My emotional reactions to stimulus are quick and intense. When those around me are giving off emotions (be them positive or negative) I am acutely aware of them and often react with the same intensity.

This is why I’m a great person with whom to party. I will take all your enthusiasm and energy and reflect it right back to you. I’ll keep dancing till dawn if you can keep up with me.

This is also why I’m not always the best person to have around in a crisis. I want to live with peace rooted deep within me, but find it so often escapes me when I need it most. Kathryn had a hair emergency yesterday as we prepared for the wedding of two friends. I had a solution (go to a hairdresser’s) but she had her own in mind. Still, I could tell she was anxious and stressed and I really felt like my solution was the key to us getting through the tough moment.

And then I remembered, “be a mirror, not a sponge.” This phrase is often taught to the loved ones of a person with BPD as a way to maintain composure when the person with BPD is having difficult and intense emotions. We’re often pegged as hard to manage (especially in therapy), but I’d like to argue that we have the biggest hearts.

So I reflected to Kathryn. “I can tell this isn’t going the way you planned. I want to do anything I can to help. If you don’t want to go to a hairdresser’s, that’s okay. We can figure something out.” And then I took ten minutes of space and left her to try and figure her way through her own emotions. When I came back she had an idea, and as I followed her lead, by golly – it worked! Her hair ended up looking beautiful, even professionally done and we did it ourselves with patience and by staying calm.

Today, one of the men here in the hospital is having a particularly difficult day. Not only can I hear him yelling and swearing at the nurses, Kathryn could hear him too when we were on the phone together. His words are triggering anxiety within me, I find I’m nervous and tense with no concrete reason. Here too, I can see myself absorbing the emotion in the air around me, harbouring his anger and angst. I’m loosing focus of my own goals for being here and getting lost in his. Even as I type this, he continues to yell and my hands shake. I called Kathryn in tears, frustrated at being in the hospital still after so many months, and wondering when I’ll ever get my freedom back.

If there’s one thing I know, I won’t get my freedom back by diving into this anxiety head first. By obsessing with and encouraging my emotional response to this man’s outburst, I’m only hurting myself (and likely the ones I love as well). Again, I find myself breathing in “be a mirror,” and breathing out “not a sponge.” The best thing I can do for myself is distract my mind and emotions to something else – perhaps writing a blog post! And when that’s done I’ll put on some music and remember the love my friends Jen and Pete shared with all of us yesterday, and how attending their wedding stirred up all kinds of good memories and emotions about our own wedding day.

This week I put my family through the ringer with my struggle to be well.

Their response has been to speak words of life over me, telling me they see me as beautiful, peaceful, joyful, hopeful, kind, full of life and laughter.

They have called me strong and brave and a fighter.

They have told me I will be well again and have infused hope into our conversations.

And I can’t say enough how loving and supportive and strong and compassionate and incredible my sweet darling wife is, how lucky I am to be with her every day.

She told me today that I am not my illness and I believed her.

She is my guiding light.

Today when I looked within, I found wellness, and I know these steps are precarious and that I still need the support of my medical team and family, but my story is not over.

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