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My first big bucket list item was learning to pilot an aircraft
A child of the swinging sixties, I was born in an exciting era where Ireland was just about starting to emerge from
the dark ages, but had a long way to go in terms of social reform & infrastructure. Yet Dublin had a very New Age airport terminal, where I was taken as a young baby up to the Air Traffic Control Tower, where I formed some of my earliest memories. My parents were both independently friends of Chief ATC Tom Donovan. It introduced me to aviation, but it was not until I was 14 before I experienced my first flight, and that was on board a 4 seat Cessna 172 on a stormy day, a baptism of fire.
As a child I was born with double exotropia, where both eyes diverged outwards, the first neurological sign from day 1. I can suppress double vision when looking into the distance but for near vision it’s very tiring to attempt to read, and it has hampered my life in this respect to some extent.
My mother gave birth to me aged 41, after losing her first child, Martin, to Asian influenza at about 3 weeks old. Subsequently she had several miscarriages and was then given the controversial drug, banned elsewhere for pregnant women, called DES, in an attempt to retain her pregnancy with me. The outfall of DES daughters is that they have had a greatly increased risk of certain cancers, also autoimmune & neurological diseases, including ADHD, the latter going through further generations. In my early 20s I developed Ulcerative Colitis, an autoimmune bowel disease, and also began having neurological issues like a dragging right foot, spasmodic left hand, and my balance was subtlety and gradually going off kilter. I put a lot of these things down to annoying but likely harmless idiosyncrasies.
First time I contemplated the possibility I could have MS
At age 17 I did the secondary school state exams, gained entry to a number of college places, including science, art, psychology, but I was most unfocussed and walked out of first semester and the only thing my very tolerant parents could do was steer me to a steady pensionable public service job, so age 17 I commenced a “lifetime” service working in the Dublin City public libraries. Had lots of access to books, of course, and I was rather drawn to biographies. At least one autobiography detailed the life of a Scottish doctor who was later diagnosed with MS.
I love science, tech, medicine, and I could in a way relate to the recollections of this individual, who described very early in her career that she had numbness and dragging of one or two limbs. Now in my 20s, I was experiencing sporadic dragging of my right foot, in episodes that would last perhaps a fortnight. This coincided with a twitching left hand where I watched the thumb and first finger doing their own thing in spates. I don’t think I mentioned it to anyone, perhaps my Mum once or twice, but I did ask myself “could I have MS?”
Art
I could have made a career in art but I wanted immediate financial reward. Art would not be the best career for ready money or even long term gains. However I have done some of my share of artwork and creativity, and even if my hands have tremors I can adapt my style. Design is in the mind, not the hands, they are only one set of instruments.
Acrylic on canvas – Martine Brangan
Imagining myself as a flawlessly fit healthy individual
I’d heard of many diseases, took a serious interest in biology & science, looked upon others with “conditions” with the pity society generally affords them. There were “people with a bag” you spoke of only in hushed tones. When I was 4 years old I was making a rumpus in the church and my mother asked me to be quiet and make room for an “unwell lady”. I begged to know what was wrong with her, inotherwords why I should make accommodation. It’s just that I thought anyone really sick would be at home in their bed. My mother told me she had “ulcerative colitis”, and I was curious at this and other fancy names for being sick.
In my very late teens/early twenties I began to experience what anyone might describe as embarrassing symptoms, such that you would do anything to pretend you didn’t have them. In any case I had frequent sporadic mild diarrhoea interspersed with episodes of extreme constipation, very painful and bloody passing of stool & weakness, well you didn’t quite mention it in conversation like you might if you suffered migraines. You made any excuse, you hid away. In desperation you might approach the doctor and be told you had severe piles and evidently had a terrible diet. Only the most agonising overwhelming symptoms prompted me into the realm of a diagnosis of Ulcerative Colitis, one of the two chronic digestive system diseases that fall under the umbrella term of Inflammatory Bowel Disease.
For a young person to have a “bowel disease” is devastating. It caused me to retreat into myself an awful lot. I attended one meeting of Crohns and Colitis society meeting, that was quite enough. My mother felt terribly sorry for me, but we were great buddies and when I showed her the physical evidence after she, as a mother, asked to see of how unwell I might be. She was devastated and even apologised for “passing on terrible genes” even though my parents both had genes of longevity. Mothers are like this.
Learning to Fly!
I had behind me plenty of solo flight before I was forced to give up due to deficient eyesight without spectacles. I was marginal when starting out, failed the medical on renewal of license. A sad termination to a hobby, although I have since handled aircraft very nicely under supervision. You don’t forget. I also took some helicopter lessons, having benefitted from a good read-up on the finesse required of mastering such rotorcraft.
Radial Keratotomy, “dream cure” for sight problems
It was being promoted on RTE Radio 1 as a safe means to renew eyesight in terms of optometrics, ie cure shortsightedness. An already dated Russian surgery, I sprang forward to get “cured” and resume my flying hobby, all covered by Ireland’s publications funded private health insurance scheme, VHI.
They didn’t quite emphasise the reasonably likely side effects of severe astigmatism and extreme nocturnal glare from corneal scarring. Well let’s brush all that under the carpet. At least somebody became a multimillionaire.
My Thirties
I have always championed people fighting an issue and have participated a few campaigns with placards, such as the fight against AIDS and the fight for humanity for those so afflicted. My tee shirt caused an eyebrow from a parish priest , I couldn’t give a tuppence tbh. With a friend I championed a lovely individual with CF who went on to have a successful lung transplant cans survive over 25 years after it and we played a key role in the production of his best-selling biography.
My 40s & 50s
Might I say this era of my life could be described by many as boring, but in retrospect I look back on it as a time of relative calm. 😁
My dear father died in May 2001, aged 79, after many years of severe smoking related cerebrovascular disease, kind of a blessing in the end as he had needed more than 5 years residential care, a very unpleasant time. Had he not smoked he could have had a long life like his siblings.
New living for my mother!
My mother had made umpteen sacrifices in life to provide for living; along with her sisters ran a very successful clothing accessory company between them.
Deirdre was a very healthy woman, and after my Dad died I made sure her remaining life was packed with adventure. I brought her on many wonderful overseas trips which we both enjoyed thoroughly. Such privilege and pleasure to see her relive her young days as a travel enthusiast!
My beautiful, very witty & satirical Mum died in harness, aged 89, a couple of weeks after this picture, and really quite unexpectedly; except she had said if she were forced into that “death trap of a hospital” via A&E she would become another statistic and come out in a box. There were no flies on Deirdre. She even marked in her bedside diary that she predicted she would be infected by patient in next bed who was “on the way out”. I am so sorry I just didn’t just risk losing my job and nurse her myself through the self healing spinal injury. We had been a Great Team!!
After my Mum died
I hadn’t got married, and Deirdre certainly didn’t impede my having any potential suitor. She would have liked had I become pregnant either married or as a single mother, and become a grandmother. Her death was an immense loss, but I could better tolerate it after such an incredibly more fun and joyous life we shared in her last decade. We brought each other great comfort and love and she laid great foundations for me to cope with her eventual loss.
Severe Colitis & Colectomy
This is a space mainly to describe MS related topics, so I’ll go brief on the colitis I had since before my 30s and which by now turned into very nasty episodes with a lot of blood loss, and accompanying arthritis & severe skin necrosis. This could not go on, as episodes started to become potentially life threatening.
Panproctocolectomy with end Ileostomy
This is the surgery I had to undergo to cure the colitis. Complete removal of colon including anal area. There were umpteen complications which kept me in and out of hospital for months, but I am made of the stuff of recovery.
Antarctica
Several surgeries, but not so many months later I got to my bucket list destination of Antarctica!
Started what I considered real living in 2017. Recovered from surgery & its complications but somehow felt very shaky. Of course that was put down to my very extreme surgery. “Nothing to see here”. Electrolytes can be very much off kilter post ileostomy, but this was not actually really the case here. I mistakenly put my growing muscular weakness, episodes of tremors entirely down to the after effects of the surgery.
TKR etc
A year or so after the colectomy I developed a small bowel obstruction due to an incarcerated parastomal hernia and underwent an emergency surgical repair. Later I had to undergo total left knee replacement as the joint had totally given up supporting me. The recovery was especially difficult as I didn’t seem to be able to work my muscles in spite of immense effort. I was declared lethargic, even lazy. I tried my best, had a falling out with the orthopaedic surgeon who believed I wasn’t putting in the effort required first recovery.
Lots of interesting travel!
In spite of all of the crap, I got to do a lot of bucket list items. Galápagos, where I witnessed a rare volcanic eruption and got my tweeted picture used by the BBC, my first ever bit of social media influence! I had by now travelled to all 7 continents, and had acquired a lot of appreciation for the similarities and differences all around our planet. The similarities stand out most. Except Antarctica, nowhere is quite like that.
2022
I think this is the year I knew something must really be wrong. For years I had been a little unbalanced, uncomfortable on steps, but trying to hide it as I really felt embarassed considering I had no explanation to offer people as to my unsteadiness. This is a particularly cruel aspect of undiagnosed MS.
I was twisting my foot, both feet, I was examined at VHI minor injuries clinic which offered to further my enquiry after finding my feet had greatly diminished feeling. I declined, only glad I hadn’t broken anything.
2022 Christmas Parachute Jump!
Bored all Christmas Day 2022, I booked a skydive next day. A bucket-list item I promised to keep until after 60, or until I stopped being a coward 🤣 60 seems suitably far away when you are in your 20s flying light aircraft but terrified out of your skin at the prospect of jumping out of one.
MS Diagnosis
After falling and knocking myself unconscious the most benign diagnosis in my case could be MS. Motor Neuron Disease was a possibility I could not countenance, I had seen that close up and personal when a cousin got a rapid form of it and was dead within the year. Prof Niall Tubridy was the first person to acknowledge the MS diagnosis in spite of others “mentioning” it as a possibility. We are taking about August 2023 here when I first attended the MS Clinic in St Vincent’s University Hospital.
From here onwards I will post items in the Blog – see link at top of page
MS Martine: a life with Multiple Sclerosis 