We are living in an unprecedented time. Each day, like a soap opera, we watch our world and our lives unravel as we free fall through our money, security and our sense of self. Is there a bottom to this virus? Will I ever be able to protect and care for my family? Will I ever feel safe again? The whole thing seems to be happening with breathtaking speed. It’s the loss of control which frightens the most. It feels like what Ernest Hemingway said about going broke, “At first it happened slowly, then suddenly.”
Compounding this is having a disabled family member in our care who needs an extra layer of love and protection. It’s quite easy to find yourself sitting in the quiet of your house late at night with you fingers interlocked and head bowed thinking, “Why me?” It’s not easy being a grownup. If you choose to read on I hope to offer you a path through this madness. It’s not ‘expert’ advice, it’s not a “how to” manual giving you ten easy steps to fix this mess. It’s simply ‘me’ talking you ‘you’ about some things that worked for my family.
Just before sunrise on December 3rd, 2018, I was awakened by a persistent noise in my bedroom. My wife wasn’t in bed and, as I turned on the light, I found her sitting on the floor in the aftermath of what was a major Stroke. I watched her eyes follow me as I moved and saw that she was unable to speak or move. The gravity of what had happened was horrifying in a way I’d never felt horror before. I called 911 and the usual chaos ensued. The ambulance, then the hospital, the nurses and doctors quickly moving between their machines and the arrival of friends as word spread. Many readers of this website know all of this very well because of your own horror story: car accident, shooting, drugs, workplace accident. Whatever the reason we all found ourselves sitting at the hospital bedside of someone we deeply love, wondering how to make sense of it all and fearing life will never be the same again.
Over the next 10 days the medical professionals advised and updated me on Louise’s situation. Yes, it was a major stroke and the blockage on the left side of her brain caused her to lose speech and movement on her right side. She could no longer walk and communication between us was reduced to the ‘point and guess’ method. Her cognitive self, thankfully, did not seem to be injured. We were residents of the US Virgin Islands and with that come certain limitations in care. The hospital on St. Croix is always financially broke and the physical plant itself broken because of repeated hurricanes. The doctors looking after Louise did their very best with what they had to work with. They advised us that, even though the medical emergency had passed, we now faced a rehab emergency. It would be best if we left the island for someplace better equipped to handle this.
Arriving in New York City on a cold mid-December night for this tropical couple was a bracing experience. The ambulance to take us to Mt. Sinai ER was waiting as arranged and we were now being introduced to big city medicine. The first 2 days in Mt. Sinai were spent in ER because no room was available. We watched big city emergencies unfold from our tiny, curtained-off cubicle as doctors and nurses attended to the stream of gunshot, overdose and accident victims in an efficient, unemotional way. It was really something to witness. Louise was assessed, reassessed and finally assigned to a room in acute rehab where an intense, month long re-entry into the world of walking and speech began.
It was painful for me to watch as my wife began her struggle for every step and every word, something that we all take for granted. A month of this, 3 hours a day, morphed into a 3 month stay crosstown at Riverside Rehab in their sub acute therapy facility. Louise spent the winter of ‘18 and ‘19 in hospitals trying to regain the basics of walking and speaking while I, as her principal cheerleader and chef, brought her food from the outside world. It’s really true what they say about hospital food.
After a winter in NY therapy we were released into the wilds of the city and spent the early Spring in the apartment of our dear friend Vigi in Harlem. We were taking the skills learned in therapy into the real world and nothing is more real than NYC. Want a coffee? Prepare to dress in your cold weather clothes, transfer into the wheelchair, cross the street in a bitter wind, arrive at the neighborhood Starbucks where you will need help opening doors, before finally ordering a coffee and searching for a place to sit safely out of the way. For a cup of coffee!
Need to go downtown? Fine. Call the wheelchair accessible Yellow Cab and watch the driver open the back hatch to all the machinery (fascinating!) that will pull Louise and her wheelchair up into the cab. Now you are down in Times Square in a sea of humanity. Ready to jump out and negotiate this new world for the first time in a wheelchair? Umm…can I have a minute to think about this? No, you can’t. Do you want to be locked in an apartment forever? Then just do it!
This is the new world being revealed to us 4 months after her stroke. You can reject it if you wish, but the result will be a very diminished life, locked up in your apartment and reading about the world on your iPad instead of engaging with it. We both said a resounding ‘no’ to that!
I began Googling, searching for blogs and websites that would teach us about this new world. In searching I came across this website, Wheelchair Travel, and was mesmerized. John Morris was letting me in on 1000 things I could do, see, ask for and demand in this new world. Maybe, I thought, we won’t be as limited as I imagined.
One night as I sat reading Wheelchair Travel, I opened a video of John driving the streets and sidewalks of Bangkok in his motorized wheelchair. I’ve been to Bangkok several times. I know what the traffic and crowds are like there. I watched his world of viewing life from an elevation of 4 feet as he slalomed the streets of Bangkok like a pro. An obstacle was not an obstacle to him, rather something to be worked with. I leaped out of my chair (true) and threw my fist in the air, “YES!!” I excitedly showed Louise what was possible. We didn’t have to give up traveling, I said, just make some adjustments to the way we do it. I was met by silence. No, she said, I’m not ready for that.
The look on her face told me she was a long, long way from negotiating Bangkok, or most places other than the familiar ones, until a lot of change took place. This was my first inkling that a disabled person’s outer world is very much controlled by their inner world. So now I began the journey down the rabbit hole of the inner life of my newly disabled wife.
Louise had lost her speech, so I was now her voice — when asked questions that she should answer, I had to speak for her. But I began to notice it wasn’t enough to simply speak for her. Those were my words and my voice and I needed to learn to speak in her voice. Those replies needed to come from her sensibilities, not mine. When asked a question, I took a moment to think, ‘how would Louise answer this?’ and used that voice to respond. In addition, after I had answered, I would ask her if she agreed with what I said. Most of the time she did but, when she didn’t, I would patiently listen and help her respond in her words. This helped to re-empower her by knowing that her intentions and wishes were being understood.
When a person suffers a personal tragedy it’s not just the body that is broken but the mental, psychological and emotional self too. Occasionally even the spiritual self can be shattered. As I looked more closely I saw that Louise was often on shaky ground. She feared falling, a disaster to someone who is on blood thinners to prevent another Stroke. She was always empathetic, but it now seemed that her ability to feel another’s pain and cry for them was closely tied to the emotional fragility she now felt. She was used to being a busy, active person in charge of her life and had a large group of close friends. She taught yoga, celebrated weddings and worked as a decorative painter, turning the walls of client’s homes into subtle works of art. In the time it took for that tiny clot to break away from her heart and block a vessel to her brain she lost it all. She needed a safety net and who else but me?
My love for her was shifting, deepening. Here she was at the most vulnerable moment of her life and I wanted more than ever to let her know that she was deeply loved and would be cared for until my last breath. I told her (and tell her) this in words every day. After 45 years as her partner you may think this unnecessary, but she needed to hear it and I needed to say it. As the safety net spread and she relaxed a little into the comfort it offered, I found my love for her going to a new place. I had always cared about and loved her, but probably in the same way that most couples go through life. We take certain things for granted and have our expectations about each other, but this was new for me. Her well being and protection became paramount and I began to see a beauty and strength in her that I hadn’t noticed before.
While this was happening I began to notice changes in myself. My sense of fear diminished as I entered this new life as a caregiver. In the first few weeks, few months of this odyssey, I felt challenged and inadequate at every turn. This stroke was…big! I’d never had to confront anything quite like it. I had the responsibility for the care and healing of the closest person to me in life and it was scary. I was being given advice by her friends, often as to what I should do next, and it felt overwhelming. I wanted to block it out. And here I made my very first important decision: soften, don’t harden.
If I were to create a shell around myself as a way of protection, I would deflect the noise—sure—but also all the good that would come from them to Louise. These were Louise’s closest friends. They loved her and were offering support and guidance. To not accept that because of my fear would be to deny Louise all the help they were offering. So I discarded the shell and let them in. As I extended this to others I felt a bit of courage blossoming, a welcome feeling after so much anxiety. I began to cultivate this newfound courage by treating the obstacles we were encountering not as big, scary monsters but as walls to be scaled. I began to feel courage not as bravado but as something that was quiet and came from my core. I adopted the attitude that, ‘yes, this is big and scary but I’m going to face it and do my best and whatever comes from it is what will happen’. I wasn’t as anxious and felt I could better help Louise with this additional confidence.
I was keeping our community of friends and family updated through periodic e-mails as we moved from place to place in search of treatment: New York City, Vancouver, Canada (Louise’s original home) and now Santa Fe, New Mexico. Through it all, our community sent us love and support and without them we couldn’t/wouldn’t have been able to get through this as well as we have thus far. In a return e-mail from an acquaintance on St. Croix, he complimented me by saying that I was a good model for a philosophy he’d just adopted in his own life called Stoicism. I was intrigued and thought I’d better investigate.
As I read about Stoicism, I found that it is a very old philosophy from Greece and Rome about living your life in an upright manner, being true to yourself and genuine in all ways. It has 4 basic tenets: courage, wisdom, moderation and justice and, by adding a touch of kindness, you can become a better person and hence more useful to others in a time of need. OK, I’m sold. I’m in a time of deep need and I certainly need and want to become a better man so I delved into the writing of the men who founded this philosophy: Marcus Aurelius, Cato, Seneca and others. George Washington was a big fan of Marcus Aurelius and read his book Meditations every year, so in a sense, the United States was partially founded on their writing. It’s not at all the dense stuff we think it is — it’s actually easy to understand. It felt much like a western Buddhism. Reading their writing resonated with me so I adopted it as my own outlook and it’s helped immensely in serving Louise and helping her along in her healing.
Healing from a major stroke is a very slow walk. I always equate it to watching ice melt. The brain has been injured and nerve pathways damaged. This takes a long time to repair itself. Brain science is really progressing and, as brain plasticity is better understood, new ways of seeing and healing the brain are discovered. Through mycology, electrical stimulation, acupuncture and yoga, knowledge about the brain is growing. What was once given up as hopeless is now being seen as treatable and even reversible. Don’t give up! Summon your courage.
You, I, John Morris and all the readers here today are a part of a tremendous community. We assemble to share our ideas, take and use the methods, tips and tricks of others, and try to better our lives. As friends we offer each other the best of ourselves and hope it inspires. I know wheelchairtravel.org inspires me. Although I said at the beginning of this story that this isn’t a “how to” on fixing your life I’d like to leave you with a few takeaways…
Your life is changed, not ruined. Yes, the spinning wheel stopped on you. It stopped on Louise. The path of our life was altered and we’ve been forced down a new road. This is what IS. Take a breath and a brave first step down that road. It takes courage. Be courageous. You’ll only get out of it what you put into it. That was true before your tragedy, it’s true now.
You, not God, not Government, are the master of your world. Don’t give up the power you have to another to fix your life. It’s all in your very capable hands. The cavalry is not coming to save you. Neither is the boogie man coming to scare you. There’s just you, with a little help from your friends. Step up. You can do this. You can fix this. It won’t be the way you expected it to turn out but it will be your way. You will be respected, even applauded, for it.
Soften, don’t harden. A hard shell will deflect the pain. It will block the ceaseless advice and opinions of others, but it will deflect their sincere love and support too. You’ll need the good stuff they offer if you’re going to give it your best shot. Relax. They love you. Just let them do it.
Finally, your way is the best way. Trust yourself. You’re smarter than you think. Your uncles, aunts, mothers and children will have no end of advice for you. Listen to it all with a grateful smile but if it doesn’t resonate with you…don’t follow it. You intuitively know what feels right. Trust that.
I’m a rookie at caregiving. It was only a year and a half ago that I was thrown in the deep end and I’m still learning how to swim. Many of you are seasoned pros with decades or perhaps a lifetime of skills and tricks you use to bend the world to your situation. I would urge you to share them right here at wheelchairtravel.org. It helps me, who desperately needs to learn from the skills you’ve acquired and it helps you, whether you know it or not, by encouraging reflection to make better sense of your own story. Please consider letting your inner writer out for some exercise. I sincerely wish you all the very best of everything.
Jake is a full time caregiver for his wife, Louise Leard, and a former 40 year resident of St. Croix in the Caribbean. They are now on a healing odyssey that has taken them around North America to their present home in Santa Fe, NM. It is his strong intention to stand once more with Louise and watch the sunrise over Angkor Wat. You can follow his travels, musings and foibles on Instagram at stx_man.
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