 8 May 2020 My brother died last Tuesday. Tomorrow would have been his 33rd birthday. It was very sudden and unexpected. It wasn’t COVID-19. But COVID-19 helped to turn his death into something beautiful. My brother was handicapped with an intellectual disability, autism spectrum disorder and epilepsy. He had also just started to walk again, after shattering both legs in a terrible fall in the mountains, a difficult air rescue out, seven surgeries and three months in hospital. He wasn’t born disabled. All it took was one tick bite. And our family's lives changed forever. But his life was not small, or hidden. Ralph touched so many people - in ways both big and small. This is his story. And the meaning of a life like my brother’s for us all.  I was almost 16 when my brother was born. My older brother almost 18. Ralph was a very - very! - unexpected addition to the family. What’s it like to be in high school, where your mother is your English teacher...and she’s pregnant...and then you have a baby brother? In a word: awesome. Precisely at a time when I wanted my parent’s attention anywhere but on me, my brother’s arrival ensured exactly that. Frankly, we adored him. He had four parents, not two, really. It was certainly one hellava way to experience up close and personal just how much work babies are. I needed no schooling about the value of contraception after that. Our lives changed irrevocably when Ralph contracted tick bite fever when he was just 20 months old. His temperature rose so high that he was overtaken by a temperature convulsion...and then remained unconscious. Rushed into hospital, my older brother and I waited anxiously at home. When Dad called, terrible hours later, he was in tears. The doctors had done everything they could, he explained. Our parish priest was at the hospital with Ralph, praying over him. Would we please call the church and activate the prayer chain? We did. Miraculously, Ralph survived, prayed to life by his mother. He regained consciousness after five days. But he had suffered a cerebral edema, and the doctors warned that he would almost certainly have brain damage. Only time would tell how bad it would be. When Ralph came home, he was like a newborn. He couldn’t even lift his head. We celebrated each new development milestone reached (again). We had so much hope when he first reached for Dad’s pen in his pocket as Dad scooped him up into his arms after coming home from work - that had been Ralph’s characteristic gesture. And then the seizures started. First petit mal. Then grand mal. And it also became clear Ralph had indeed suffered brain damage. Our hearts broke again. But we soldiered on. Through the tantrums, the despair, the laughs. Ralph was an utter rapscallion. He would get into everything. We became a lock-everything-up-and-hide-the-key family. He refused to sleep in his bed. He waited until Mom and Dad came to bed, then crept into their room, and lay down on the floor in their room to sleep. Exhaustion and being at our wits end became the new normal. “I don’t know how you cope,” asked one family friend in disbelief as Ralph trashed everything again one afternoon. “What choice do we have?” we asked back. “We cope because there is no alternative” It’s a question all too many families of children with special needs face. And it’s the wrong question. Every family - truly, every family - copes the best way they know how. From the outside looking in “How do you cope” is a natural question. From the inside looking out, coping is just what you do. There is no “how” to coping. There’s just “you cope.” My older brother and I grew up, went to university, got jobs, travelled overseas, met our future partners, had our own children. Ralph went to a special needs school. Then, at 18, to a large adult care center providing mostly for Down Syndrome adults. They had just established a new addition where they were taking in other forms of intellectual disability and it was possible to buy a “life right” to fund the expansion and secure a coveted spot. Mom and Dad moved quickly to secure Ralph a place. They were viscerally aware that because of their age, they had to get Ralph settled in a long-term care home as soon as possible. With my older brother and I with our own lives and families, they were determined not to place the burden of Ralph’s future care on us. And to do everything they could to secure Ralph’s future. They had heard too many stories of families who kept disabled members at home, until the parents died, and then it was too late: there was no one to take in the now much older disabled adult, due both to their age and their inability to adapt to life in a group home. Mom and Dad were determined to avoid that mistake. Life, it seemed, had a different plan. By 2020, Dad - now 75 - (Mom having passed away in 2017), was down to the one last option in the country that could take Ralph with his mix of both intellectual disability and challenging behaviour: Open Circle, in Cape Town. He had tried every other home in the country that would accept him. The kicker? COVID-19 and South Africa was in one of the strictest lock-downs in the world, with all inter-provincial travel banned. Except for funerals. So Dad had to go all the way to the High Court to get a permit to travel to get Ralph there, after the local police, local magistrate and COGTA (Cooperative Governance Traditional Affairs - the coordinating governmental authority for South Africa’s COVD-19 response) all refused to grant a permit. The court documents make for searing reading. From 1989 to 2020, Ralph had been admitted 33 times to 28 different places. He had been expelled from every single residential group home my parents had tried - including the very group home my parents had founded and funded along with some other families. The “short” list of Ralph’s key risky behaviours included (but there were many many more incidents)
Throughout the years Ralph had been on a wide variety of anti-epileptics and drug trials. Nothing had ever brought his seizures fully under control. Complicating matters severely was the well known fact that many anti-epileptic drugs have an adverse impact on behavior and vice versa. Periods of intense anxiety would also cause seizure spikes, a phenomenon called Psychogenic Nonepileptic Seizures (PNES), that is only recently becoming more studied - and is still barely understood. And, after a decade of trying to understand the triggers of Ralph’s violent outbursts, his team finally concluded that his sudden, unexplained outbursts of rage were a form of seizure and totally outside his control, or the control of the carers looking after him. But whatever the cause, these explosive outbursts were real, frightening, dangerous, getting more frequent and severely complicating his care. Living at home with Dad was simply not a viable option - for Ralph or Dad. Total seizures in Ralph’s lifetime ran into many thousands. And with each seizure his neurological function would decline that tiny little bit more, and his challenging behaviours increase that tiny little bit more, such that by the end of 2019, there was only one facility left in the country that had the potential capacity to deal with Ralph short of complete psychiatric institutionalization (and even that was questionable) or homelessness (more probable). The High Court case made the news in South Africa, with the headline “Lockdown favours the dead over the living.” We heard from Dad’s lawyer that it likely helped many other families. “It appears that the judgement has made a lot of people descend on the Government for help armed with the newspaper article. Looks like you have helped many and caused the Government to look at amending their regulations.” For Dad, however, it was a pyrrhic victory. The High Court had given him 5 days to complete the move. Exhausted - mentally and emotionally - from the isolation, the caregiving, separated from family, the vigilance to keep himself and Ralph safe, and the incredible emotional, mental and financial burden of pulling together an urgent High Court case, he somehow managed the 1,500km trip from Howick to Cape Town. Calling my older brother and I along the way to talk to him and keep him awake and going. He went through 10 roadblocks on the way, but not one - not a single one - looked at the court papers permitting him to travel. Indeed, the police actually told Dad en-route he should just have faked a death-certificate and said he was going to a funeral. The utter disconnect between what he had been told was the only way to travel (a ruling from the High Court case) and the reality on the ground, beggars belief. We still don’t understand it. But Dad and Ralph had arrived safely in Cape Town, awaiting his move to Open Circle, so we were hopeful - for the first time since 2017. But Ralph was not. Ralph was in torment. His memories of Cape Town were of his four recent psychiatric hospital admissions in the state hospital, a three month stay in the state’s psychiatric residential institution and the group homes and sheltered workshops from which he had been expelled. His anxiety was at a fever pitch. While all of us knew that Open Circle was his last, best bet, Ralph could not understand this. And so his anxiety spiked...and spiked...and spiked again. Like his temperature had risen all those years ago. Until he did not survive that one last epileptic seizure.  Reading all of this and you would be forgiven for thinking that Ralph’s life was misery and living with him misery. For sure, the last 6 months had been particularly hellish for my father, but that would be an incomplete picture. And not do justice to the life my parents carefully nurtured for Ralph, or the life Ralph actually enjoyed. If there was one thing that emerged so powerfully and beautifully from the virtual memorial service we had for Ralph, was just how much Ralph had been fully integrated into our family’s life - both immediate family and our larger friendship circles. We loved camping, hiking and climbing - so Ralph came along too, and loved it. After Dad injured himself and needed to turn to kayaking instead, Ralph came along too. Weddings, funerals, family gatherings, family holidays - Ralph was always there, a member of the family the same as everyone else. As Dad moved into retirement and got out even more, Ralph joined him even more, and was warmly embraced by the various hiking, climbing and kayaking groups Dad was part of. Many of these friends joined Ralph’s memorial service. And shared beautiful and warm memories, and shed tears, and read poems, and offered tributes to Ralph and Dad. This was one of them:  The thought and prayer that Ralph had gone ahead of us, again, to show us the way...brought most of the 200+ in the service to tears. When we put together the slideshows of Ralph showing his love of the mountains, his connection with family and friends, what we were reminded of so poignantly - and which the challenges of recent years and months had obscured - was just what a happy, sunny, cheery, delightful, full of mischief boy and young man he was. His life was not that of one being trapped in a deteriorating mind. It was a life of great joy and connection. Ralph: Son, brother, uncle Music: Special Star, by Mango Groove It was Ralph who brought my brother and sister-in-law together. She was one of his early student carers, providing relief and respite to my parents. Ralph was also beloved by his nieces, who have many happy memories of hikes, building puzzles and playing snakes and ladders with him. After Mom’s death, Ralph gained two “other Moms”. Dad’s housekeeper, turned carer, was beloved by Ralph. He turned to her repeatedly for solace. She in turn loved him like he was a son. It was truly special to watch. When Dad met his amazing new partner, Ralph’s gentle, open spirit engaged her too. Ralph’s amazing ability to connect with others was one of the other abiding themes of his service. Many of Ralph’s early teachers had insisted that Ralph would never learn to read or write. It was his speech therapist in the early 2000s who refused to accept this limitation placed on Ralph, and worked with him to learn how to do both. During the service she shared how formative this experience had been for her too, as it had come at the beginning of her career. Going against the consensus that it was a fool's errand to try to teach Ralph to read and write, she trusted her sense that Ralph was desperate to learn how to communicate. And he did. She shared how much of a lesson this taught her: never to limit her expectations of what disabled people are capable of achieving. After Mom’s death, Dad gave Ralph Mom’s phone, so Dad could contact Ralph regularly at his group home. Ralph had other ideas and soon discovered WhatsApp. And then...well, Ralph’s communication just exploded. It was like he had finally been given the key he needed to open the door he had been standing in front of for years. WhatsApp became his primary form of communication, especially of his feelings and emotions - something he struggled incredibly to convey in actual conversation. In 2019, Ralph sent Dad over 4,500 WhatsApp messages - and that was just to Dad. There were many more thousands sent to the rest of us. Dad periodically tried to limit his sometimes inappropriate calls and messages by “cleaning up” his address book. But Ralph just re-entered numbers from memory. His messages gave us an insight into his inner reality, and are a precious treasure to us. He also became a highly competent internet surfer - finding anything at all that he wanted and sharing it to us via WhatsApp. The family joke during the service was that we better expect him to find the recording of his own service on the cloud. But the most profound, and important, aspect of Ralph’s life, is what he taught all of us about disability. First, all too often still, children and adults with intellectual disabilities are “hidden away” - from families, from society. Their odd behaviours and awkward communication too uncomfortable and strange for the neurotypical to bear. So we’d rather just not know, not deal. But Mom and Dad had made an early decision never to do that, always to treat Ralph as the member of the family he was, and to include him like we would any other member of the family. For sure, it was uncomfortable at times. There was more than one occasion when the family was invited to something, but Ralph was asked not to attend. My parents always declined those invitations. Then there was the matter of Ralph’s service. With us all separated under lock down, and Dad overwhelmed by too many separate messages, we set up a temporary WhatsApp group, directing everyone there as the best place to share a condolence message, a memory, a story and get details of the service. Membership of that group exploded, It included Ralph’s carers, Mom and Dad’s university friends, extended family, friends of both my older brother and I going all the way back to our high school days... There were people from literally every time in all of our lives - and Ralph’s life...and some that we had not seen in decades. We were stunned. We had thought the service would be small - maybe 20 or 30 people. But as the Zoom log-ins reached 40, then 70, then quickly approached 100, each with on average 2-3 people behind the camera, I had to upgrade my Zoom account on the fly just to make sure we could accommodate everyone. In the end we reckon we had some 200 or more on the call. It was the largest Zoom meeting I had ever hosted. And it was almost certainly larger than would have been possible or likely under “ordinary circumstances”. That Zoom call spanned 14 time zones, from us in the Eastern US, all the way to Australia. Many were there to support Dad, my older brother and I. But all were there because Ralph had touched them in ways big and small. A cousin who barely knew Ralph shared “I didn’t spend much time with Ralph, but in the past when I have been down and out, I have sometimes thought about him and how despite all the immense difficulties he endured, he still had fun and took enjoyment in things. Makes me stop and try to do the same.” Someone who had only met Ralph in the last twelve months said “In the short time that I knew Ralph I was always struck by how he was such a quick thinker, He had the ability to be very specific and precise with the details about his traveling experiences.” From another of Dad’s “mountain cronies”: “It was at the Johnson Hut that Ralph and I sat on a rock overlooking the Helderberg Mountains. It was late afternoon with gentle light on the distant scene. His rocking stopped as I placed my hand on his knee. I asked him about his favourite place. The Drakensberg, of course. His rapid, hesitant speech quietened as his mind took over the memories dear to him. He hardly needed the prompting of the few questions I threw in. That time spent with Ralph on the rock was brief, but one that stays in my memory as a beautiful connection with him.” Ralph: Hiker, climber, paddler, explorer. Friend and companion. Music: Great Heart - by Johnny Clegg and Savuka What was planned as a 60 to 90 minute service, became a nearly two and half hour tribute. But there was also another focus to all the tributes to Ralph. And these were tributes to our family - and in particular to Mom and Dad - for all we had done to show how a life like Ralph’s can be integrated into normal life. Dad, of course, shies away from this, pointing out that Ralph was, in so many ways, an “everyman” who could speak for many of the handicapped because he had the ability to communicate - more than so many. And that is true. But what is also true is that Mom and Dad worked tirelessly for the needs of the handicapped. Dad was a founding and active member of the Southern Intellectual Disability Initiative in Cape Town, helping to raise R12 million to establish three new group homes, and a fourth state home, the Open Circle. More importantly than raising funds, SIDI brought together a true partnership of government, families, donors, non-profits, health-care providers, homes and others - a new, and needed model in South Africa. For the first time, everyone was actually talking to each other, in one room. In the words of Feroza Cassim, the SIDI Group Home Coordinator, at the end of Ralph’s service, “This is the legacy Ralph leaves behind. This was his purpose. He was a means of awakening and steering the strength of his parents in driving this initiative, which will continue to help those in need for years to come. Parents achieve what we as professionals often struggle to achieve.” It can be excruciatingly hard to be the parent or sibling of an intellectually disabled family member. There can be moments of despair, doubt, grief, heartache and exhaustion. But there is so much more to their lives than that as I hope you can see. They call forth from us a responsibility, a care, a compassion, a joy, a purpose. This is what humanity - everywhere - asks of us. So we celebrate Ralph. An integral member of our family. And a vital part of our society.   Here in upstate New York, we’re coming to the end of our fourth week in lockdown.
What I’ve learned so far is
But more than anything else, I’ve come back again and again and again to gratitude. And to compassion. These practices are the bedrock of my resilience. Gratitude for my family, my community. For where we live. For enough food. For shelter. For being safe at home. For effective leadership. For spring coming. For digging my hands in the dirt. For creek walks. For the beauty, decency, kindness and humanity that is bubbling up everywhere. And with gratitude also comes awareness of my privilege. I’ve written about it before. But the stark and grim news of how this virus is most impacting people of color, the marginalized, the disenfranchised, the poor, the less able, minorities, the abused is both shocking and sobering. We need not to be silent about this. Not to look away. It’s hard to talk about this. We need to. Gratitude doesn’t mean I don’t have hard feelings about all of this. Tears, anger, acting out, fear, doubt, worry - these are all very present for me. My long-suffering husband and back-at-ya’ kid will tell you so. But I also know that comparing my suffering to that of others and coming up short (i.e. who am I to be feeling anxious or complaining, other people have it so much worse) is not a path to greater compassion and empathy. It's called comparative suffering, and it doesn’t work to increase our capacity for compassion or empathy (see here and here). And what of compassion? That too is a practice. Like gratitude, it leads to compassionate feelings. But first and foremost it starts as a practice. And I’ve needed it so much these last few weeks. As the tiredness and weariness of struggling with new ways of parenting and working - simultaneously, obsessively reading the news until midnight, or numbing out on Netflix until 1am (by some bizarre choice we landed on Hunger Games as our first lockdown binge watch...hmm, not our best choice) and my heart breaking at the loneliness of our son, and the use of screens as the only way to connect with his friends, it’s been hard to always be kind to myself and my family. We’ve snapped at each other. We’ve done the tug-of-wills. We’ve done the “let’s have a serious family chat.” Again, and again...and again, I’ve had to give myself permission to hit the pause button. To slow it down. To deliberately and intentionally first give myself compassion for what it is I’m feeling, or however I have behaved, and then from there, reground myself in what’s really important, own my part, and reach out to connect. I don’t have the answers here. I don’t know what normal will look like on the other side of this. I fear, deeply, what we may lose - lives, livelihoods, and perhaps much else. But I also have hope - deep hope - that something beautiful and amazing may also come of this. It is the practices and skills of resilience, gratitude and compassion that I keep coming back to. And they sustain me. Even as I am head bowed, tears pouring down my face, or wanting to punch someone in the face so enraged am I at callous leadership and pig-headed selfishness. So as I take a deep breath in, I practice those skills. I feel my body held and supported by the couch I am writing on. I sense the rhythmic rise and fall of my chest, the warmth in my hands, the pleasant tingling in my feet. I close my eyes and listen to the bird calls. I look outside and appreciate the soft beauty of snow showers swirling in the wind. I take in the luminous lime green of my raincoat that jumps up and down excitedly announcing “it’s spring, it’s spring, it’s spring.” I let it start in my body. And radiate and grow from there. Sending you all light and love and life. Wherever you may be. May you find peace. May you find solace. May you find love and community. May you find hope. In kindness, Sue (PS: I’m making the resilience toolkit I’ve been slowly developing available to everyone on my email list. To access, click <Log In> on the website then <Reset Password> and enter your email address. Let me know if you have any problems.) |
Sue Mann - CoachReflections on how we reclaim and sustain our worthiness in the face of falls and challenges. Archives
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