One of my most popular posts/blogs has been "dying from CF"...I find that both fascinating and surprising. So I figured I would do a follow up post and dive a little deeper into what I went through. This is my experience, but again I think most patients experience similar things.
For me it felt like it came swiftly, but in reality it did not...I just wasn't willing to open my eyes enough to recognize it for what it was. Death by CF is a slow decline like the analogy of the frog and boiling water: Suppose you want to boil a frog. How do you do it? You could place the frog into a pot of hot water, but as soon as it feels the heat, it will jump out. So, what can you do? Put a pot of cool water on the stove and then add the frog. Not sensing danger the frog will stay. Next, turn the burner on low to slowly heat the water. As the water warms, the frog relaxes. The warmth feels good. As the water gets hotter it acts like a steam bath draining away energy and deepening the frog's relaxation. The frog becomes sleepy and has less and less energy while the water is getting hotter and hotter. By the time the frog realizes its danger, the water is beginning to boil, and it is too late to take action. There is neither time nor energy left to do anything. The frog perished in the boiling water.
By the time I was finally able to accept the reality that "CF had slowly boiled me" I too was too exhausted and therefore unable to "jump out" although there was nowhere to jump to. CF left me with only two options. Fight for new lungs or accept the fact that I had fought CF for 28 years which was 20 years longer than most doctors thought I would.
The first step was overcoming the denial...it may sound weird but I experienced the 5 steps of grief/loss. Most people experience this when they loose a loved one, but I was experiencing it as I saw my own death approaching. I was grieving the loss of myself....
I found this information explaining the 5 steps of grief:
"All, keep in mind — all people grieve differently. Some people will wear their emotions on their sleeve and be outwardly emotional. Others will experience their grief more internally, and may not cry. You should try and not judge how a person experiences their grief, as each person will experience it differently.
1. Denial and Isolation
The first reaction to learning of terminal illness or death of a cherished loved one is to deny the reality of the situation. It is a normal reaction to rationalize overwhelming emotions. It is a defense mechanism that buffers the immediate shock. We block out the words and hide from the facts. This is a temporary response that carries us through the first wave of pain.
As the masking effects of denial and isolation begin to wear, reality and its pain re-emerge. We are not ready. The intense emotion is deflected from our vulnerable core, redirected and expressed instead as anger. The anger may be aimed at inanimate objects, complete strangers, friends or family. Anger may be directed at our dying or deceased loved one. Rationally, we know the person is not to be blamed. Emotionally, however, we may resent the person for causing us pain or for leaving us. We feel guilty for being angry, and this makes us more angry.
Remember, grieving is a personal process that has no time limit, nor one “right” way to do it.
The doctor who diagnosed the illness and was unable to cure the disease might become a convenient target. Health professionals deal with death and dying every day. That does not make them immune to the suffering of their patients or to those who grieve for them.
Do not hesitate to ask your doctor to give you extra time or to explain just once more the details of your loved one’s illness. Arrange a special appointment or ask that he telephone you at the end of his day. Ask for clear answers to your questions regarding medical diagnosis and treatment. Understand the options available to you. Take your time.
The normal reaction to feelings of helplessness and vulnerability is often a need to regain control–
- If only we had sought medical attention sooner…
- If only we got a second opinion from another doctor…
- If only we had tried to be a better person toward them…
Secretly, we may make a deal with God or our higher power in an attempt to postpone the inevitable. This is a weaker line of defense to protect us from the painful reality.
Two types of depression are associated with mourning. The first one is a reaction to practical implications relating to the loss. Sadness and regret predominate this type of depression. We worry about the costs and burial. We worry that, in our grief, we have spent less time with others that depend on us. This phase may be eased by simple clarification and reassurance. We may need a bit of helpful cooperation and a few kind words. The second type of depression is more subtle and, in a sense, perhaps more private. It is our quiet preparation to separate and to bid our loved one farewell. Sometimes all we really need is a hug.Reaching this stage of mourning is a gift not afforded to everyone. Death may be sudden and unexpected or we may never see beyond our anger or denial. It is not necessarily a mark of bravery to resist the inevitable and to deny ourselves the opportunity to make our peace. This phase is marked by withdrawal and calm. This is not a period of happiness and must be distinguished from depression
Loved ones that are terminally ill or aging appear to go through a final period of withdrawal. This is by no means a suggestion that they are aware of their own impending death or such, only that physical decline may be sufficient to produce a similar response. Their behavior implies that it is natural to reach a stage at which social interaction is limited. The dignity and grace shown by our dying loved ones may well be their last gift to us.
Coping with loss is a ultimately a deeply personal and singular experience — nobody can help you go through it more easily or understand all the emotions that you’re going through. But others can be there for you and help comfort you through this process. The best thing you can do is to allow yourself to feel the grief as it comes over you. Resisting it only will prolong the natural process of healing."
*I found that info at http://psychcentral.com/lib/the-5-stages-of-loss-and-grief/
****So the answer is YES I went through all 5 stages...in the last 6 months of my "CF Life"****
1. Denial & Isolation: I was told I needed to wear O2 24/7 I hated it, I refused...I wore it just at night and tried to hide the marks the tubing left in my face. I felt admitting I needed it made me weak. When my lungs became so bad that I HAD to wear it out in public...I felt embarrassed and I felt I was a failure so I tried to avoid going out in public, but that was almost impossible. I found strength to face my peers and continue to live my life wearing the O2.
2. ANGER: I am honestly not an angry person in general, but looking back did I feel angry? I did. I feLt I had lived my life being compliant & I believe that if I did everything the doctors said I would somehow beat CF, but when I realized that was a HUGE lie I disillusioned myself with, I felt angry at CF. I felt angry that I was helpless....I was angry that the doctors kept telling me that there was nothing they could do, that there was nothing any hospital would be willing to do because of the b.cepacia. That anger is what drove me to step 3.
3. Bargaining: I didn't bargain as much as I turned to GOD and asked him why? Sincerely asked him why...and I prayed so many nights to be healed. To take the pain and suffering from me. I cried alone and tried to understand why, despite all I had done, I was left to this fate. I grew really close to my savior at this time...I knew he was the one person who knew my pain, felt my desperation and understood why I was being asked to endure this. My tears were full of pain, fear, and sadness and I knew he hurt along with me. He was by my side and although all the promises in the world wasn't going to change how my CF played out, I knew he heard me and comforted me.
4. DEPRESSION: I was happy on the outside, I smiled through the pain....in fact I felt obligated to be strong for everyone around me, but for the first time in my life I truly experienced then hopelessness that depression is. I started to see the inevitable and it was not a happy joyful experience...but being the optimist I truly am, depression didn't completely consume me & I surrounded myself with the love and support of my husband, family and friends. I started to feel like I didn't have much else to offer others and that I was more of a burden than anything. For me the depression was very personal and internalized. I would play Josh Groban's song "YOU ARE LOVED" over and over and over to remind me that I had a reason to keep fighting, to not give up. It was where I drew a lot of strength from...those simple words and the feeling that song gave me kept my spirit hopeful despite the overwhelming sadness...
5. Acceptance: I first found acceptance through prayer, priesthood blessings and personal revelation that I knew GOD had a plan for me, that either way I would have the strength to endure to the end and that if I was to be healed it would be HIS will. I accepted that being healed could mean being called back to heaven and be free from my broken, sick, weak and worn out mortal body. However, I feel I TRULY experience acceptance on Dec 7th 2007. I was in PITTSBURGH and my health was crashing...I was dying right there far from home but with Bryan by my side. I accepted that I could no longer carry my burden and I surrendered to GOD's will completely. I found peace. I was calm and I was not afraid. I was comforted and my fear was gone...it was a beautiful feeling of being separated from my mortal limitations. All my fears of leaving Bryan and his pain, and my families pain was not burdening me....I had peace that everything & everyone would be okay. I felt joy and happiness...I was prepared to accept whatever was next.
That is when the doctors/surgeons held a meeting and decided to list me...I was put on a ventilator where I waited...for my miracle...3 days later I was in surgery getting the answer to so many prayers.
That is what dying from CF felt like for me. I experienced denial that I was 'Not that sick', anger at CF and the lack of compassion the CF centers showed me, I grew closer to GOD through prayers asking to be healed, depression and disappointment in myself, then finally I found peace through acceptance that I had done all I could and I had the Faith to leave it in Gods hands...I did what I was told to and I knew my miracle was awaiting me. It was not easy and I don't wish it upon anyone, but I know when we endure to the end we are blessed. I was.
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