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SWORD Campaign – Story 6

Jul 31, 2013

Article extracted from the series "Miracles of ALLAH by Rehana Shah Bulbulia" from the SA based print magazine- The Muslim Woman.

Miracles of ALLAH-Al Muqeetu…The Controller of All Things

We imagine and sometimes believe, that we are the navigators of our lives sailing across the ocean of our destiny. Yet we are many a time corrected by ALLAH, that our lives are navigated as according to His Will, His Decree and that He is indeed Al Muqeetu: The Controller of All Things. And when we finally place our complete trust, reliance and hope in His Capable Hands, we find that our sojourn is not as difficult as we imagined and as long as we allow ourselves to be swept with the current of His navigation, good sailors we will be.

Returning to our series, Miracles of ALLAH, in which we share the miracles of ALLAH's various qualities in real life circumstance, we recommence this month with an inspirational interview with young and vibrant Sister Sumaya Kola. A dynamic muslimah who currently awaits a double lung transplant. She shares her life experiences as a pulmonary hypertension patient and the realisation and acknowledgement that ALLAH is undoubtedly the Controller of All Things. We believe that her story will leave us inspired, educated and enlightened regarding the chronic illness PH as well as in awe of ALLAH's complete control over all our affairs. Walking us through the journey and challenges that has come to be her daily life, Sister Sumaya began…

"Bismillahirahmaniraheem.  Being diagnosed with Pulmonary Hypertension just over ten years ago at the age of fourteen was life changing and slightly overwhelming but with time and faith in ALLAH SWT I have managed to somehow pull through. Simple things that were previously easy for me to do and that most would refer to as normal-everyday tasks, has become somewhat difficult. There are times when I can’t walk from one room to another in our home without getting severely out of breath. Even brushing my teeth, going for a shower and getting dressed in the morning has become a challenge. Sometimes just a mere long conversation with someone over the phone can be most tiring. The feeling of being fatigued all the time and having no energy can become depressing. And there are days where you feel helpless and wish you could do more for yourself but it’s on those days you have to gather extra strength, pull yourself together and place your trust in ALLAH, that with His Help everything is somehow going to be ok.

Emotionally, when I was first diagnosed I was terrified and overwhelmed because at that time, being fourteen years old, I didn’t really know what PH entailed or what was going to happen and to make matters worse,  I was given the notion that I probably wouldn’t live to see my twentieth birthday. But Alhumdulillah by the grace and mercy of ALLAH I overcame my fears and developed the courage, hope and strength to carry on and also surpassed the life expectancy set by the doctors.
 
I have found that through my link with ALLAH SWT, learning more about PH and the support of my family, friends and doctors, accepting this illness as part of my life has become easier. I have lived the past few years of life as normal as possible. I completed school, began working at a corporate IT company and made the most of life by spending each day to the fullest. Two years ago, however, the inevitable had happened. My PH had begun to progress, it was something I dreaded but knew would happen at some point in my future; a reality that my doctors had warned me about. With the progression of the disease came the talk of a heart/lung transplant.

From thereon my condition became a little more complicated and I had to take extra precaution when doing things out of the ordinary. I started having severe dizzy spells or fainting when walking up hills or stairs; I would become fatigued doing little or no activity and would develope severe chest infections every few months. Eventually after being hospitalised twice in early 2012 I was told that I needed to make a decision about going onto the list for the heart/lung transplant.  Making the decision was the most difficult step and one of the biggest tests I have ever faced. At first I experienced anxiety to the extent of losing hope. Needless to say this feeling of anxiety was the scariest feeling in the world. Alhamdulillah through the help of ALLAH and the people He put in my path, I made the decision to proceed with the transplant. It was through this period of my life that I found my true strength and had begun my journey of self-discovery.

I have learnt through all my experiences that our emotions are mostly mind over matter. I have also learnt to fully and truly put my faith in ALLAH SWT and hand my life over to Him completely. I have learnt that I am far stronger than I think I am and most of all I have learnt to never give up hope no matter how bad a situation may seem. I have come a long way since being diagnosed and being told that I needed to be listed for a transplant. I feel like all the confusion, the anger, the anxiety, the fear and the pain seems worth it because through all of this I am closer to my ALLAH SWT than I could have ever been. My life has changed in so many ways; ways I can only be grateful for and although I‘m still a tiny bit afraid, I feel like hope has replaced most of the fear and I now look forward to the day that I will be able to breathe easy and live a normal life once again.
 
Explaining to us exactly what PH entails and the reality of living it, Sister Sumaya continued, "Pulmonary Hypertension (PH) is a rare lung disorder where the blood pressure in the arteries of the lungs elevates, thereby putting pressure on the heart and reducing the amount of oxygen that should reach the tissues of the body, causing shortness of breath and exhaustion. This can significantly impact the sufferer’s ability to lead a normal life. PH often leads to heart failure and death. Pulmonary Hypertension may be a standalone condition or it may develop during or after pregnancy, due to Congenital Heart Disease/Defects, Hypothyroidism, Pulmonary Embolisms, Deep Vein Thrombosis, autoimmune disorders such as Multiple Sclerosis, Systemic Lupus Erythematosus, or an HIV infection. It can also be a result from the use of drugs such as appetite suppressants, oral contraceptives, and other illegal drugs such as Cocaine.  It is frequently misdiagnosed due to its similarities to Asthma, Chronic Bronchitis, Congestive Heart Failure. Living with the condition can be extremely difficult, what would seem simple for other people is far harder for patients suffering from PH, for example walking in a mall, going for grocery shopping, having a shower, getting dressed, bending down and sometimes even eating can be exhausting.

Most patients look almost absolutely normal but are suffering invisible pain on the inside, we feel like someone who has run a mile even on a good day. People who don’t understand put us down a lot of the time telling us things like we should exercise more or we should stop stressing so much in order to feel better, not realising that exercise makes us worse and even if we didn’t stress we would still have PH. Most patients are on oxygen at least some part  of the day, depends on the severity of their PH. I am currently on oxygen 16 – 20 hours a day and there are others who use it 24/7. Young women with PH are told from the onset that pregnancy is a huge risk and should be avoided and so finding a companion who is willing to accept you, considering all this, can be difficult.
There are currently 9 FDA treatments available in the USA, UK, Canada and even places like China, Saudi Arabia and India but we in South Africa have only one of those treatments available here which many patients cannot afford..

In her concluding sentiments Sister Sumaya shared with us, wherefrom she draws her strength, "From my deen, from talking to and making du’aa to my ALLAH SWT, durood recitation and remembering the difficulties that each and every Ambiyyah went through, the greatest of which were faced by our beloved Nabi Sallallahu Alayhi Wasallam. He was Allah’s most beloved yet Allah tested him greatly.  I believe that Allah SWT chose me to go through this trial for a reason, and that He is in Control of my life. The reasons I might not understand right now but one day In sha ALLAH I will look back and everything will make perfect sense.  A Qur’aanic ayah which has helped through many of the decisions I have made in life including the decision to be listed for the transplant is, “Then when you have taken a decision, put your trust in Allah, certainly, Allah loves those who put their trust (in Him) (42:43). I find that reading Salaah, Qur’aan and Islamic literature has played a huge part in helping me deal with my struggles. It gives me a joy, peace and contentment deep within my heart knowing that ALLAH is there, watching, guiding and helping me through each day.

One other thing I draw strength from is observing those who are going through far more than I ever will: the orphans, those who suffer poverty, those in war torn countries and the oppressed Muslims in Palestine, Syria, Burma, Afghatistan, Kashmir, Mali. I observe their steadfastness despite their adversities and my problems don’t seem that big anymore."

We fervently hope and pray that Sumaya continues to draw strength from her greatest passion- her deen, as she awaits a lung donor and that ALLAH grant her and all those who are faced with illness, a complete and perfect shifa, ameen. And May our Kind ALLAH also fulfill her wishes and aspirations for the future : in creating awareness about PH; in being a patient advocate; in inspiring and motivating others as well as assisting and striving for the cause of Palestine and Syria, ameen Ya Rabb.

As we reflect on Sister Sumaya's challenges and life's journey, we comprehend the importance and value of placing our trust completely in ALLAH Subhanawata'ala and in consciously recognising and acknowledging that no matter what, ultimately He is Al Muqeetu- The One Who Controls all things.

Let His Love lead the way, in the blessings & obedience of ALLAH endeavour to live your day…

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