You are currently browsing the tag archive for the ‘disability’ tag.

For my patients who have used this law, I was honored that I could be with them every step of the way, ensuring that they were cared for, and that they had control of the final days of their lives. That’s what death with dignity really means. – Nicholas Gideonse, MD 

When I was a child, I grew up on a natural lake. I was probably in the water eight hours a day. My family called me a fish. As I got older I learned to waterski– two skis, then one, or slalomming. I was on the swim team in elementary school, delegated to the 500-yard freestyle, because I was the one with the physical endurance to swim 5 laps, straight. During the summer I rode my horse, daily. In high school, I was in the snow ski club. And, in graduate school in New Orleans, I rode horses and ran road races in the scalding heat of the Louisiana summers. Needless to say, I was always physically active and athletic.

Running was the first ability I lost. I was 47 years old, with two children, a horse farm, and a psychotherapy practice. Within three years, I could no longer ride my horse and I started tripping and dragging my right foot. While carrying my computer, I fell on the wood floor and broke my patella in half, which led me to a walker. Although I dreaded using a walking aid, I was glad for the safety it provided. That was, until I fell on my walker and cracked my sternum.

With a cracked sternum, standing, sitting, any movement was excruciating. I’d bruised ribs in the past, but nothing like a sternum crack which required assistance for any movement. I was losing my autonomy. Around this time, I began having “accidents,” incontinence particularly disturbed my husband. This affected my dignity.

After failing to engage the brakes in my car quickly enough and finally stopping in the middle of a busy street, I realized that I would never drive another car and risk endangering a life. I was losing my independence. I was still able to drive the golf cart on the farm, which gave me  some sense of autonomy, but all of the chores were left to my husband, which was not our agreement when we purchased a labor-intensive horse farm.

My husband was becoming more and more irritable and resentful. Burdening loved ones is another huge fear to an active person becoming disabled. Each of these losses could lead to major depression, but having been a therapist or in therapy much of my life, I have the internal resources to deal with these stressors. Fortunately, I was not financially dependent on my husband or the government. I cannot imagine the level of suffering people encounter, when terminally ill, who are less resourced than I, either internally or externally.

After cracking my sternum, I was almost relieved to sit in a chair where I was safe from excruciating injuries. “You don’t get the small stuff,” exclaimed the doctor who read my patella x-ray. So, sit in the wheelchair, I did.

Probably the two worst symptoms of progressive multiple sclerosis are heat intolerance and intractable fatigue. I used to call it “crying fatigue,” because all I could imagine doing was to lay on the floor and cry. It was not grief or sadness that led to crying, but intense exasperation, with no emotion attached. Only someone with chronic or terminal illness can understand this level of pain and suffering.

After Katrina, when we had no air-conditioning for a month, in the heat of the Louisiana summer. I remember stumbling to my car with my walker, turning the engine on, sitting in the air-conditioning and crying. I knew I could no longer live in this state of Louisiana that I loved, that the heat and the hurricanes were more than I could bear. I no longer had the endurance of the 500-yard freestyler or the independence to care for myself with a partner who was beginning to resent me more each day. We would move to Colorado. I thought that would solve many problems, but little did I know my life was about to, once again, change forever.

On the way to Colorado, a wheelchair accident resulted in my femur being shattered, the largest bone in the body. It was shattered so badly, that the surgeon had to scrape the pieces together, to screw the stainless steel plate to something. This is where my book Meet Me By the River – A Women’s Healing Journey begins and chronicles my life from devastation to deep gratitude and joy. (Shameless plug.) From the hospital, I was discharged to our new home in Colorado. Six months later, my husband/partner of 11 years left and I, reluctantly and not very gracefully, was to learn how to live alone with this degenerative, neurological illness. Fortunately, I had the financial resources to not be a burden on my family for at least a decade.

Many people facing terminal illness embrace a spiritual life for the first time. Even if they were religious, their beliefs take on greater meaning, much like a spiritual initiation.

I began to see these physical limitations as directed by a higher power. I no longer saw them as punishment or some failing on my part; I saw the Universe as loving and I saw how my ability to impact myself and others was much more effective in this condition. The healing in myself and others was profound. I began to love this illness and see it as a course correction that was leading me to my highest purpose in life. The joy I experienced was infectious. The help I could provide to others was more than I’d ever imagined, with an able body.

As the illness progressed, I began to assess the level of suffering I was experiencing. At some point I knew that my suffering would no longer be a positive catalyst; the suffering would be needless. This pivotal point is different for everyone, depending on their capacity to process the pain and suffering, their level of development, and the Mystery beyond our limited knowing.

In November, the Aid-in-Dying law became legal in Colorado. The most common reasons people choose Aid-in-Dying are loss of autonomy, becoming a burden on one’s family, loss of independence, financial concerns, loss of control of bodily function, fear of uncontrollable pain, loss of ability to participate in pleasurable activities, and loss of dignity. (I highlighted some of the issues that cause me the most suffering in red.) This law is well-crafted to protect the vulnerable from abuse: one must be in the process of dying, be of sound mind, be able to self-administer, and no other person can benefit from this choice.

Opponents of this law often use the word suicide to incite people, emotionally, in my opinion. I have assessed suicidality for 30 years as a psychotherapist. When suicidal, a person wants to die. I have talked many a person “off the ledge.” It is an insult and a misnomer to ascribe suicidality to a person in the sacred dying process, who is finally able to surrender and let go. What a harmful imprint this could leave for the family to carry. Words have power.

All of this being said, my first choice would be to die naturally. Unfortunately, people never die from MS, they die from “complications from multiple sclerosis.” The complications can be: sepsis from pressure sores, choking to death which has to involve a beloved caregiver trying so hard to keep me alive, drowning in my own fluids from pneumonia, or some other horror I don’t yet know about. The best option I could hope for would be failing to thrive, or starving to death, slowly. Keep this in mind when considering choice.

Societies that rule with a more parental, autocratic style usurp one’s sovereignty for making choices for themselves and their bodies, which includes how they might want to leave this beautiful world. These regimes characteristically manifest a disregard for women’s rights, or a disrespect of the Feminine. (I use “the Feminine” as a term applicable to either gender: having more of a tendency toward vulnerability, empathy, and sensitivity. These are values that have been punished for nearly 5000 years.) Hopefully, we are integrating more feminine values moving toward a kinder, less violent world.

In the meantime, if I begin to feel complete with this lifetime and ready to let go and serve my loved ones from Spirit, do not conflate this sacred decision with suicide. This is not suicide. I do not want to die. My life has always been about service and learning to connect more deeply in Love, I know myself and I know this intimacy and animation will continue, and, most likely, express itself in a much deeper Way.

There is a crack in everything. That’s how the light gets in. – Leonard Cohen

Throughout this journey of chronic illness, I rarely speak of the nearly unbearable grief I’ve experienced, as my body slowly failed over many years, and progressed rapidly over the last decade. I almost exclusively describe the gifts I’ve received by facing the challenges with determination and courage, not so much, the heartbreak.

My children were three and nine when the symptoms began. I remember driving my son to elementary school and praying that I would be able to meet his and his sister’s needs through high school, while my children were completely dependent on me (and I, probably, on them). Who would drive them to school, accompany them to soccer games, dance performances, and Mardi Gras parades? Who would talk to the teachers when they had conferences in school or problems with their friends? How would I be able to go to therapy three times a week to heal myself emotionally to better meet their growing needs? My life had become totally unpredictable and everything was on the table for catastrophic change.

When the first symptom began during the late 80s, my first thought was for my children. What kind of legacy would this leave  them? The terror I felt about not living up to my greatest responsibility and privilege was more than I could bear, or so I thought at the time. I’m sure the specter of desperation followed me and shaded every choice I made during my 40s and 50s. Not all of my choices were well thought out and generous. After all, I was losing my physical strength that had carried me through many challenges – if I could count on anything, I could count on my body – and my body had been the vehicle for much reliability and joy in my life.

I began running road races with my daughter when she was three during the heat of New Orleans summers, I swam laps for miles and miles to restore some semblance of well-being and hope for the future. I believed if I could heal, it would be in the water. This does not describe the radical lifestyle changes I made or trips to India for stem cell treatment and many other alternative treatments.

When I see the look of shock and despair on people’s faces when they meet me, see my profound physical limitations, or hear my story, my common line is, “My life is not a tragedy.” Well, it isn’t, but it has been marked with many tears, regrets, and feelings of despair along the way.

My hospice workers tell me I am a legend around their office, my friends tell me I am a hero. Well, I’m here to tell you I have made desperate choices in my life that have deleteriously affected my children, I have lived with a great deal of fear, depression, and cowardice. I’ve cried an ocean of tears. No one facing catastrophic illness or injury should ever feel reticent about expressing their grief. It is through the cracks where the light gets in.

I have grown through this illness. I probably have grown some heroism. I am also human with human frailties. Human nature is an incredible thing. If I can do this, anybody can do this. About that, I have no doubt.

“When you look long enough into the abyss, the abyss looks into you.” Nietzsche

SpeechlessRecently, a caregiver asked me with a slightly horrified tone, “What if you can no longer speak?” Actually, there are times now, during the day when I cannot speak, like when I am on the stationary bike, when I am on the stander and late afternoon when speaking in groups, of which I am in ten per month. This particular disability has been happening gradually for the last four years, especially since I returned to high-altitude and It has become much more pronounced in the last six months.

I have learned to accommodate yet another disability, dysarthria– motor speech disorder caused by muscle weakness with neurological illness. I have learned that if I pause or whisper for a few sentences, I can often get my breath back and project a little more to make myself heard. Summer and the heat it brings exacerbates this symptom.

The potential for having this disability has been obvious to others, but being unable to speak and the ramifications had never occurred to me. I tend to not project into the future imagining what abilities I might lose next. This has probably been an effective strategy for lessening what is called “anticipatory dread” and, therefore, decreasing unnecessary emotional suffering. This represents another way my personality has evolved. I used to be accused of seeing the cup as half empty, as opposed to half full. Ironic that with this terminal neurodegenerative disease I’ve become more optimistic.

Actually, my first thought upon hearing this question was of recently having seen The Diving Bell and the Butterfly, a film about a man with “locked in syndrome” who, after sustaining a severe stroke, could not communicate after having been a robust communicator all his life. Somehow, I trust I would get my point across, even if I need to blink my eyes three times as he did. Sometimes I practice that while laughing about the irony with my caregivers. Fortunately, I don’t take this ordeal very serious much of the time. I don’t tend to marinate in fears of the future, at least not these types of fears.

What I have learned in accepting this “curriculum” is that if I become unable to speak, there is a greater teaching in the symptom. I have no doubt that my focus would need to go beyond the cortically-based area of the left brain where speech arises, exploring areas much deeper than the fears of becoming speechless. I bow to this anomaly and will accept it as my next teacher.

In my humble opinion, nothing is arbitrary when I have accepted such a rigorous path and it becomes more clear that I have, in fact, entered the Holy ground.

“One world is dying, and another is being born. Let us attend to both with compassion.” Marianne WilliamsonDan-and-Terri-in-MauiSMALL

Terri Daniel became a friend in 2011 after I read her fascinating journey with her son Daniel. At ten, Daniel was diagnosed with a rare neurological illness, much like ALS. Terri was his primary caregiver for the remaining six years of his life. For the last two Daniel could not speak. Terri learned to communicate with Daniel telepathically, so that after he transitioned at sixteen, the communication resumed and they have now written three books together.

Their first book, Swan In Heaven affirmed a revolution in me that was well underway, internally. Daniel disseminated profound teachings, one of which has informed much of my understanding of my process of late. Daniel described a “mirror image” process, where when one dies and their breathing diminishes, on the other side the diminished breath manifests as light. So as the breath from the human body dissipates, the light gets stronger in Spirit, “until the last breath closes one door and opens the other.” I have realized that as my functioning decreases in this denser form, my Light is increasing in function and Beingness. For me, the apt metaphor is one of being birthed. The only experience I can compare this to what is watching a filly being born on our horse farm in Louisiana. With each contraction, the filly was more a part of our realm.

My respiration is greatly diminished, but my Spirit is getting stronger every day. The home health nurse is always astonished at the shallowness of my breath. Also, living at 8000 feet altitude diminishes my breath even further. The introduction of any errant bug can be the catalyst for my transition at any moment. Living on the edge has its challenges and its rewards. The more I reflect on the latter, the more regenerative and joyful my life is.

Moving toward one’s end-of-life can be traversed abruptly or slowly. Some people believe how one proceeds is predetermined prior to incarnating. How free will can interplay with this predetermination can alter the trajectory. We are just beginning to understand what can be called the last frontier.

Exploring my feelings surrounding this transition can bring varying degrees of fear and panic, until I realize everybody does it. We are all birthed into this physical existence, like the filly and we are all birthed out. They are the most natural processes. If you believe in reincarnation, which I do, I have probably done it hundreds, maybe thousands of times. Amnesia, chosen on a soul level, makes it seem new every time, allowing the teachings to be integrated on a deep level.

Thinking about who and what I am leaving brings tremendous grief in the limited knowing sphere. I completely believe that we really don’t go anywhere, we just vibrate at a higher frequency, making it harder to perceive. I told my children they will just have to learn to listen better. Terri learned to listen to Danny better. Imagining where I am going, seems adventurous. I have had a vision from long ago of an amphitheater on an ocean that feels familiar. I know this is a sacred place beyond this frequency. I just know it. I have always felt there will be a great celebration when I cross over and there will be much support, as I will continue to be a support for my loved ones, family and friends.

When I remember to focus on my destination, I become joyful. I am thankful for the sacred trailblazers who are compassionate enough to show us the Way.

“Freedom’s just another word for nothing else to lose.”–Janis Joplin

It doesn’t matter what you call it; just noticed what bodily sensation is elicited from hearing those adjectives. Personally, it makes my skin crawl to hear all three descriptions. Somebody referred to me the other day as bedridden, despite her meaning well. I felt like I had been punched in the solar plexus. Are those terms a physical description or a state of mind? Are they legal terms or something that determines one’s disability status? All I know is that neither I, nor any of my friends, can relate to those terms at all in relation to me.

I sit in my comfortable reclining chair twenty-two hours a day, seven days a week. Every few months I leave the house to go to an appointment. Does this relieve me of the description of being housebound? All of these questions, of course, are rhetorical. It seems to me that the usage of that terminology is reductive for my humanity. If someone didn’t know me personally, these adjectives might elicit pity or perhaps fear, which is always underneath pity, in my opinion. No one who truly knows me would ever consider describing me in any of those terms.

Last Christmas I had a traumatic experience that really made this whole discussion personal. I received a request on Facebook to have a visit from a group of carolers from Crestone. Christmas carols have been a part of my history despite being raised Jewish. For nearly six years during my time in New Orleans, I was an active participant in an interracial, interfaith, gospel choir. During Christmas we frequently sang at the St. Louis Cathedral in the French Quarter. Singing music during the holidays was familiar to me for connecting with the holiday spirit. At least that is what I thought would happen when I agreed to the request.

An hour after the carolers were scheduled to arrive and just before my next appointment, they made their appearance. It has been said that Crestone is made up of meditators, mystics, and misfits. I am sure that I could have received all three labels by different people at different times in my life. As thirty people straggled in, an hour late, my enthusiasm began to wane abruptly. On one level, I knew they were well-meaning, but the setup was disturbing. I should have been alerted to this possibility when the organizer mentioned, “we are a group of people who go caroling to the housebound.” I didn’t catch it at the moment, but later as I reflected, I noticed myself wondering who the housebound person was we were going to sing to. They filed into my round living room en masse and began singing the common, ordinary Christmas songs my choir never sang. I began to feel the depth of my disillusionment. As I looked around, the energy in the room felt “charitable,” to be generous. I could feel that the singers were singing to the “poor, disabled shut-in.” I had never seen myself from that perspective before, so I know it was not projection on my part . I started to compulsively make jokes to at least let them know that I was clever and that my mind was clear. The message I desperately wanted to convey was, “it’s okay! Really, I’m okay. It isn’t as dire as you think. It’s all going to be okay. This is just a temporary costume,” they looked so pained.

When they finally left, I felt diminished, marginalized, maybe even objectify. It took a few hours to clear the energy of their projections, both individual and collective. I shudder when I remember those feelings and I now know that it is essential that the people I surround myself with be responsible for their own projections and that they know who I am and that this illness is NOT ME. The visitors that Christmas day were in their role**of being charitable, magnanimous. They only saw my body; they were not seeing me, the brave soul undertaking this courageous curriculum to work through my deepest challenge of powerlessness to increase my love of Self.

I learned in an important lesson that day about projections. I learned that I am more vulnerable to other people’s unconscious projections than I realized. I learned that the terms shut-ins, housebound, and bedridden are merely states of mind and they can be dangerously reductive. I learned that one needs to be responsible for one’s own projections, the feelings beneath their benevolence. Many are not capable of this level of awareness so I need to be more vigilant, more protective of my vulnerability. I learned a lot that Christmas day.

I’m fortunate to say that everybody in my life on a daily basis sees me, beyond my costume for this particular role. I will use this as a teaching moment. Some of the most evolved souls enter the human body of seemingly vulnerable individuals, the homeless, alcoholics, the mentally and/or physically disabled, in order to grow and especially to serve humanity. When I was a small child, a religious woman who was close to me once told me that Karen, a mentally disabled child in the neighborhood, was an angel from God and that Karen would report back to God and let him know how she was being treated. Of course, there was the authoritative, punitive attitude placed on to a male God, but I received the message, both on a literal level and a metaphysical level.

Of course, these descriptions can be superficial and innocent, but they have power. We need to be responsible for our projections which I believe are mostly fear-based, fear of the unknown or fear that it might happen to me or one of my loved ones. Are we merely seeing the costume for this lifetime or are we seeing the Soul? If you would like to come to my home for a visit and you are able to see me beyond the level of the body, you are very welcome. Come, share, and be in Holy Communion.