What if a person who is sentenced to life in prison was allotted a cell that progressively shrunk? Eventually the cell would become so small that he/she would no longer be able to stretch out their limbs. Soon enough they might resign themselves to a foetal position and await their death. But it is not an idle wait. The pain induced by the walls of the cell on their body ensures that he/she is subdued to tears, or enraged enough to yell at the moon. Each day there is a sense of resignation, but it is equally matched by a desire to live. The struggle is constant.
I did a massage for a lady who is in her 60s. Her skin was well toned. Nothing sagging anywhere. Not many her age could boast of that. But all is not well with her. She is about five feet in height and weights under 80lbs. She has a disease called Scleroderma, one of the symptoms of which causes the skin tissue to gradually tighten. Some call it the skin of steel. As you could imagine, this takes such a toll on the nervous system that pain is the regular diet…breakfast, lunch, dinner, and snack time too. Ita, this dear lady, has been battling with Scleroderma for eleven years. It is degenerative, so her weight slipped away, her fingers started bending out of shape, and ‘mature spots’ appeared. There are many more symptoms, of which she has quite a few and is therefore considered a classic case of Scleroderma.
Susan, the Founder of Scleoderma Care Foundation, who is also afflicted with this disease, said that massage was beneficial to her. Sadly, one day when she showed up at the Spa for her massage, the regular Therapist was not on duty. Another Therapist was assigned to her, but she lacked the courage to go through with the massage, because of the appearance of Susan’s skin. Susan said that she briefly tried to educate the Therapist about the disease, but she would hear none of it. She refused to do the massage. Professionalism went out the door, and Susan felt the blunt edge of scorn and rejection.
Weight loss is dramatic. Ita recalled having plump thighs and very noticeable buttocks. Susan spoke of having eaten a whole cake in an attempt to regain some weight. Dolly, who was diagnosed earlier this year, said that she lost 30lbs between February to now. I inquired of Susan whether there may have been whispers that she had AIDS. Yes. The physical revolution that one goes through easily creates room for such speculations.
Lindy showed up in one of the Massage classes last year. She came with two friends, one was Dale. Deneyce showed up in the next class. Dale had told her about the massage course and she was interested. Deneyce is the daughter of Susan. So I say Thanks to Lindy for convincing Dale to participate. I say Thanks to Dale for not just tagging along, but for finding enough value in the programme to willingly testify of it to Deneyce. Had the cards been played differently, I would not be writing this. I needed to be touched by the lives of these people and have my life touch theirs. It was this synchronicity of events that led to Deneyce telling her mother of me. And so it was Susan’s invitation for me to share on the benefits of massage in cases of Scleroderma that landed me in her home and amongst those suffering with the disease. I was also pleased to see that there were those who were supporters as well. We need each other.
It is easy to play the victim role when illness comes to call. And it is very frustrating, after seeking medical assistance, to be taken through tests, and observations, and speculations for months before one smart guy slaps a label on you. And it is perplexing when that label is unfamiliar. Scleroderma? What’s that? I never heard of it before. Then you get to engage in avid research to understand what is plaguing you. And it’s a whole new world, but you find some consolation in knowing that there is someone out there who knows what you are going through. But it is much better when that someone is in your space, talking with you. So I applaud Susan for stepping out of victim mode and starting this Foundation so that today, those persons in Trinidad and Tobago who are afflicted by the disease have somewhere to go, to share, to bond, to be renewed to face the battle tomorrow.
The cause of Scleroderma is yet unknown. Sure, there are a few assumptions, but because there is nothing definite, a cure remains out of reach. Patients are treated according to their symptoms. Not only does the skin tissue tighten, but the membrane around the organs and vessels also shrinks. Today the heart might be squeezed, and tomorrow it is the liver. I don’t want to own a body like that. In cases where the blood vessels thicken like scar tissue, the flow of blood could slow down to the point where a Doctor may decide to prescribe medication to thin the blood. How thin is thin enough without inducing hypertension?
As Massage Therapists, we may choose to walk a path that keeps us directly out of contact with certain clients because we know ourselves to be like that Therapist at the Spa who went into panic mode. How selective should we be, given that we provide a service that directly affects health/personal care? A massage would keep the skin of a Scleroderma client supple, and definitely delay the onset of inelasticity. It would also help to bring some balance to the nervous system which sends chaotic messages around the body resulting in many unexplainable feelings.
I am now aware of this disease, and I feel the need to pass the knowledge on. Our support is needed. There are 24 hours in a day and we all have things to do, so it is okay if you cannot visit the Foundation, or do a massage. Maybe you could make a financial contribution, or donate blanket, or pretty cardigans. Cold is an issue. Giving does not require a season, but it is convenient that we are heading into the Christmas period. We have friends and loved ones who take our gifts for granted each year. These people won’t.
Aromatherapy also helps. Frankincense, Mandarin, and Palmarosa are a few of the essential oils that help with scarring tissue. You could do your own research and donate a bottle of essential oil which someone could then put in their body oil and rub on their skin.
To those afflicted with Scleroderma, there is only so much that can be done, and the point of resignation is easily reached in one weary moment. Prayers are not enough. Consider having conversations with God. For while He understands what we are going through, we don’t always understand how an understanding God could let these things happen to us. But when we quit fighting Him and allow ourselves to rise above drama of our circumstances, we get a glimpse of things from His perspective, conversation comes with every breath, and a smile embraces the corners of our lips…we understand, and are assured.
I say Thank You to Susan for agreeing to the adding of my voice to this cause. Thanks also to Adelwyn for shuttling me and the massage table. Adelwyn is both Co-Founder and President of the Scleroderma Care Foundation. He goes beyond the call of duty, and understands the need for dissemination of relevant information. For those who have never heard him speak, the website is a good testimony.
I say Bon Voyage to the lady from Palo Seco whose struggle with Scleroderma came to a grinding halt recently. She was buried on Thursday. Only thirty-five years old. She has had enough of the compulsory expensive medications with elaborate names, and cannot be faulted for such. The elements of her being now belong to the Elementals. From here on it’s all about Soul. May her soul rest in peace.
Scleroderma Care Foundation website: http://www.sclerodermatt.org/
Overview of Scleroderma: http://www.edgarcayce.org/are/holistic_health/data/prscle3.html