Patients with Crohn's Disease and Ulcerative Colitis meet once every few months, usually in a hospital setting, organised by one of the Nurse Clinicians who is dedicated to assisting patients gain support from one another. At this last meeting we had a dietician talk about diet during flare ups, and during remission, and making sure patients obtain sufficient nutrition despite their intestinal and digestive problems. A psychiatrist spoke about coping with IBD, and touched on the role of the psychiatrist in helping IBD patients.
While the talks are always useful and informative, and the Q and A sessions lively, the best part of the meeting for me is always the opportunity to meet other patients in the same boat. I saw familiar faces from previous meetings, including one lady who's had 11 surgeries, and I made new friends, including folks who have just moved to Singapore, a young lady who hasn't been definitely diagnosed as yet, and a young man doing his reservist stint in the army.
So varied is the insidious reach of IBD that people from all walks of life can be affected by it. At each meeting I encounter new patients, and I sometimes wonder how they personally cope with this illness that wrecks a life and causes so much pain and makes the simple task of eating a meal a dreadful nightmare on many occasions for so many.
This same question fuels my part time PhD. How do patients in Singapore live with IBD? How does it affect them? How do they cope with it? And how can we help them? Through in-depth interviews with patients I hope to answer some of these questions, discover more questions, and perhaps provide some answers and insight to anyone who is interested.
My PhD keeps threatening to be derailed...last year was so difficult for me with my father's illness and subsequent passing, and then towards the end of the year I became quite ill, culminating in surgery earlier this year. I have thought of giving up a few times... but each time I meet new patients with IBD I feel encouraged to go on because I admire their courage in the face of great difficulty.
I know firsthand the difficulties they face, some of which are severe, and others more moderate or even mild...but all of them must face challenges, must make adjustments, must grieve the loss of their health, must accept the incurable, must live with often debilitating side effects from medications, must learn to love themselves and continue living life to the fullest...while they still can.
After the Support Group meeting I went to a wake. A very close friend's father had passed away earlier in the day. I paid my respects to the family, and planned to attend the funeral the next evening. I made it there with my husband, and we watched as "Uncle" was sent on his final journey. The Hindu funeral is filled with many symbolically laden moments, and as the earthen pot was shattered, and Uncle's link with this earthly world broken, I felt the loud sound resonate within me...farewell to Uncle, and yes, before I know it, farewell to me too.
Some day I too will cross over into the spiritual world, some day all of us will make that journey. I listened to the eulogies by relatives, and I realized that Uncle had lived his life to the fullest as only he knew how to, and would always be remembered as someone who was a fighter.
Some day someone may stand to recount my days in a eulogy, and hopefully someone will say that no matter what life threw my way, I managed to survive it. No matter what IBD did to me, I managed to survive it. Perhaps more than just survive, perhaps I actually lived. Really lived.
Before we know it, we'll be gone, like the petals of a fragile flower perishing in the heat of the noonday sun. But before they perish they are radiant, they give beauty, they have a fragrance of sweetness that permeates the very air...they are a blessing. Seek the support of those with similar sufferings.. whatever those sufferings may be...so we can bless our fellow brethren, and be blessed in return. Live, love, laugh. And yes, cry. It's all part of being alive.
Thanks for reading,
Pav
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