Saturday, November 23, 2013

Suicide & Sickle Cell - To Parents

With the Lord’s help, I try to choose topics that could be most beneficial to anyone who happens on my humble site. For some reason, for the past two weeks, suicide as it relates to Sickle Cell patients, has been on my mind. Forgive the seriousness of my chosen subject matter, but I feel it needs to be discussed.

I am a person who wholly knows what it’s like to feel hopeless and want more than anything in life for his to end. In Section 10) Depression, Antidepressants and Counseling, I share some of my experiences with depression. Having experienced what I have with depression and suicidal thoughts, I feel I can offer some insights for anyone who may be contemplating taking their life; and for those who are concerned that their loved one may be close to doing so.

This illness causes the afflicted to experience so much. Sometimes we feel like we are going to drown in anger and frustration. With all the missed school; lost social time; absent relationships; and chronic pain...sometimes we feel as though we can’t allow ourselves to get close to others. Other times we feel like people don’t want to get close to us. Sometimes the physical pain seems unending and too intense to endure. At times it’s impossible to imagine how things could ever get better. The things we emotionally and physically cope with cause the waters of our soul to run deep, and much is swimming beneath the surface.

The words we speak are often a reflection of the frustration we feel. Frequently, those frustrated words can be perceived by others as dark. I know I’m guilty of that on occasion. A person may ask, “Is there anything I can do?”

Jokingly I have said, “Do you have a gun?”

Not many people understand or appreciate the darker tinges of my humor that can eek out. Frustrated and tired, it’s easy to say such things. It doesn’t mean we are going to act on them; it doesn’t mean we are suicidal; it doesn’t mean we need a padded cell. It may simply mean we’re tired.

So, if the occasional random expressions of a desire for death are not warning signs,  what are?

•    Frequently talking about dying or taking their own life;
•    Expressing feelings of hopelessness;
•    Reckless behavior;
•    Withdrawing from others;
•    Sleeping too little or too much;
•    Extreme mood swings;
•    A preoccupation with death.

This is a short list. There are many additional warning signs. By no means am I medical professional. A doctor or psychologist will be able to offer additional and more detailed information than I.

Personally, I experienced each one of those warning signs at some point during my struggles with depression. Though I may have experienced several at a time, I don’t believe I experienced all of them at once. So, what should you do if your child or loved one begins exhibiting a multitude of warning signs?

First, learn to distinguish the difference between an expression of momentary frustration and a true state of depression. If you can’t tell the difference, seek advice from medical professionals. Try to encourage your loved one to talk to someone about what they are feeling.

For me, talking to my parents wouldn’t have made any difference. Don’t misunderstand, I have a WONDERFUL family and incredible parents. Too often, however, children discount parental wisdom or insight. I know I did with many things. What finally allowed me to see that I needed help were several conversations with a trusted friend.

This friend was a leader in my church, but more significantly, he lived with diabetes. To a great extent, he understood what it was that I felt. In time, he helped me see: 1) there was no shame in admitting that I needed help; and 2) embrace the possibility that Sickle Cell could effect my mind just as much as my body (please click here for greater details). My point in sharing this is, sometimes parents aren’t the best source for help (mostly because we kids don't want to listen). Sometimes it’s friends, doctors, psychologists, teachers, or church leaders who have the words that carry more weight.

Suicide in young adults is a problem in our country. 4,600 people from ages 10-24 take their own life each year. 157,000 are annually treated for self-inflicted wounds. Parents and loved ones need to be aware of what is going on in the life of those they love and how those things are emotionally impacting their children.

I write this to parents not to frighten you, but to help you understand what may be taking place in your child's mind. I hid, or at least tried to hide, much of my depression from parents. I didn't want them to worry. Perhaps I was afraid of what they might think.

In the post "Family Openness" I talked about how important it is for families to not be afraid to speak openly about life and death and everything in between.  For me, thoughts about death and dying have always been present, even at a very young age. It's important to speak with your child about these things and find out what's going on inside them.

I hope this post provided some useful insight for parents.

Suicide & Sickle Cell -- To Fellow Patients

A few months back, I read on the Sickle Cell Warrior facebook page of someone with our illness who took their own life. That tragedy has remained with me. I could have been a Sickle Cell patient who took his own life. I know what it’s like to feel helpless, hopeless, and tired of the pain; tired of the struggle; and emotionally tired in every conceivable way.

Though you may not believe in yourself, God does. He believes you posses the strength to endure the trials of life. And so do I. You posses the courage, faith, will, and strength to survive all that may come your way. Find these things within yourself. I assure you they are there, and much more.

It is natural to become discouraged sometimes. Everybody, healthy or sick, gets depressed. Living with a chronic illness, you and I have a better reason than most to allow feelings of hopelessness to enter our hearts. But just because we can allow something into our hearts, doesn’t mean we should.

Free will is the singular most important gift God has given us. We all have a choice in who we allow ourselves to become and how we choose to live our life. I encourage you to choose to embrace joy. Choose to face your challenges with a smile. Choose to allow God to give you the strength you need to endure the pains of life. Choose to believe your life is worth living. And yes, life is worth living.

When I look at the years I struggled with depression, much of it was of my own doing. It came as a result of the perspective I chose to have in life. Much of my depression, I believe, was also chemical. There is no doubt that antidepressants helped correct whatever brain chemistry that was out of balance. But in addition to the antidepressants, I also changed how I thought about things. I made the choice to be happy. In doing so, I became happy.

Like I said in Section 10, antidepressants are not a cure all that will magically turn that frown upside down. They are an aid. They help. But we must also do our part to make them work. We must have the right mindset, we must eat right, and do our part to care of our mental, physical, emotional and spiritual health (I talk about those four things in Section 09). If we do our part and don’t rely entirely on the medication, we are going to be much better off.

My point isn’t to sell you on antidepressants; that may not be what you need. Only a doctor can determine that. I just know for me, there were times in my life when they helped. Presently I don’t use them.

When I learned that my heart wasn’t strong enough for the double hip replacement surgeries that I need, I was exceptionally depressed. I wondered how life was going to get better. In time, I came out of that fog of depression. My life may not be as it once was, but I do believe things will get better. I hope, whatever your situation is in life, that you carrier that same belief within yourself.

If you are thinking about taking your life, I beg you...please...do not do it! Talk with friends; talk with family; talk with God; talk with your doctor; talk to somebody. Get some help. You are too precious. Though you may not know what it is, you have a work to do in this life. You have touched people around you and there are many more lives that can become better because of you. You can make a difference in this world.

I once thought I had to live my life struggling with suicidal thoughts. I was wrong. If you are experiencing troubling thoughts like I once did, trust me when I say, you don’t have to endure them; there are people who can help. Allow them to help you.

As Sickle Cell patients we endure more pain and trials than most. In spite of those trials, there is joy and be had in life. I truly believe the joys in life can far out weigh the pain, if that’s the choice we make. I know what it’s like to not believe that. I’ve been on both sides of the fence. Joy is a far sweeter aroma than misery.

I encourage you to seek out the authentic joys life has to offer and embrace them fully. Get help. Choose life and be happy.

Friday, November 15, 2013

Don't Panic During a Sickle Cell Pain Crisis

Not long ago I was telling a friend that I once had a pain crisis that lasted over a year; it was a constant, mild pain that was present all day every day. She asked me, “Do you ever become panicky and feel as though the pain is never going to end?”

My reply was, “No. I don’t allow myself to become panicky. I learned as a boy that panic only makes the pain worse.”

“But a year of pain,” she exclaimed. “Surly you felt like it would never end?”
 “It has to end some time,” I said. “It can’t go on forever.”

¶ In section 06) Controlling Your Pain (see the post titled: Preparation – Be Calm and Breathe Normally) I spoke about how important it is to control your breathing and remain calm during a pain crisis. Like all SC patients who endure long periods of chronic pain, I know how easy it can be to feel: overwhelmed by the pain; a maddening frustration over its prolonged presence; emotionally and physically drained from combating it; and exceptionally irritable.

As patients living with this illness, I don’t think we are always aware of the emotional toll our pain takes on us and often times, those around us. When I was a kid my family found this button-pin that read “leave me alone, I’m having a CRISIS!” I thought it was funny. It wasn’t until I was an adult that I realized that I really was less patient and more irritable during pain crises.

How we physically feel is very closely tied to how we emotionally behave. I mean honestly, who isn’t Mr. or Ms. Crabbypants when their finger is stuck in a door jam? Pain and laughter don’t usually hold hands and go skipping through a field of daisies together.

I think what I’m getting at—and please forgive my rambling—is this:

•    Panicking over your pain will only make your pain worse.
•    Learn to recognize that you may be a bit crabby when in crisis.
•    While a certain level of irritability when in crisis is to be expected, try to use restraint. Just because you are in pain doesn’t mean everybody around you also has to also suffer.

Like so many patients, I know what it’s like to feel overwhelmed from the pain and complications of our illness. But we don’t have the luxury of giving into those feelings. Bottling in that stress will only worsen your health. Talk with friends and family about how your feel; find healthy ways to vent your frustrations (i.e. art, music, writing, etc.); perhaps talk with a counselor; treat yourself to something now and then; redirect that energy into positive things.

Though sometimes it feels as though you no longer posses the strength to endure the trials your health throws at you, I assure you that you do. “With man this is impossible, but with God, all things are possible.”

Friday, November 8, 2013

Sickle Cell Disease: Faith vs Fear

In the words of Yoda the Wise, “Fear is the path to the Dark Side.” So why am I quoting Yoda? One, he’s my favorite Star Wars character; two, fear is the topic for the week.

On the Sickle Cell Warriors facebook page, I’ve read several posts about how fearful this or that person is about many of the complications that could arise in their future. They live in constant worry that Avascular Necrosis will become an issue; they fear the next pain crisis; or feel anxiety about another hospital visit, to name a few. If you are presently experiencing this, please, do not take my words as a criticism. In no way am I criticizing your feelings. I just want to address this issue.

It’s human nature to fear the unknown, and with Sickle Cell there are many unknowns. I think knowledge is the first tool that can be used to quiet the fear within. If you are worried about needing a hip replacement surgery sometime in your future, the best thing you can do is learn all about Avascular Necrosis, what causes it, and what you can do to prolong its affects. Talk with your doctor, ask if there are procedures or medications that can help improve circulation to the hips and shoulders.

Until I was told I needed both hips replaced, I was fairly ignorant of the fact that hip replacement surgery is common for Sickle Cell patients. There are a great many things I wish I knew five years ago; perhaps it could have made a difference in where I am now in regards to my hips. Perhaps it wouldn’t have made any difference, but I wish I had educated myself better.

Yes, there are certain realities to our illness. But just because Sickle Cell throws this or that complication at me, it doesn’t mean you will experience the same thing; Sickle Cell affects each of us in different ways. Changes in diet, sleep, stress levels, physical activity, and medications each can have a powerful impact upon our health. Sometimes a small change can produce great results.

¶  Living with constant fear in your heart can be emotionally crippling. It will add unnecessary stress to your life and will negatively impact your health. Talking with other Sickle Cell patients can of comfort. If you are like I am and don’t personally know anybody who has your illness, there are other sources available like: facebook pages, support groups, online forums, and other Sickle Cell organizations. Talk with other patients and find out how they cope with the unknowns of their illness. It may empower you. I understand there is a pretty informative blog out there.

¶ I have always been taught that fear and faith cannot exist in the mind and heart at the same time. You either have fear or you have faith; you can’t feel both simultaneously. Having faith (obviously in God) is sometimes a complicated thing. Personally, I’ve never worried too much about what complications could arise in my life; instead I’ve had faith that God would: 1) empower me with the emotional and spiritual strength to endure them; and 2) grant my body the physical strength to either cope with or over come them.

I recall my mother once said, “Jon just takes everything in stride. He really doesn’t let things bother him.”  To a large degree this is true. I’ve always been of the mind, “What will be will be, and I’ll face what ever comes if and when it does.” That doesn’t mean I’m reckless in how I live my life, it just means I didn’t worry about things. I learned a long time ago that anxiety, like jumping into a cold swimming pool, only negatively impacts my health.

Beyond the what I’ve already said, and without getting preachy on you about God and faith, I can’t offer any additional advice on how to overcome the fear you my feel about your illness. I only know that God will get you through your next complication just as He has all previous ones. I know this because that’s what He has done for me.

The only control in life we have is self-control. There are a number of ways to manage your health through knowledge and self-control; everything else is in the Master’s hands. Have faith my friends that with God’s empowerment, you possess the strength to endure all that comes your way. Have faith that no matter what comes your way, you will be a better person for it. Have faith that God watches over and loves you. Have faith, not fear.

Friday, November 1, 2013

Angry with God About Sickle Cell?

A friend of mine recently asked me, "Don't you ever feel angry at God for all the things you have to endure?" My answer was, "No." Though this friend and I are of the same faith, this amazed her. For me personally, getting angry with God has never made any sense.

Just as we will return to live with God after this life is over, I believe that we all lived with God as His spirit children before we came to live on earth as mortal beings. I also believe, when we lived with Him as spirits, that we each chose to be born on earth; that we understood the challenges we would face while on earth; and we chose to accept those challenges.

I feel these beliefs are the reasons why I have made the choice to never be angry with God. Yes, there have been times when I wondered why this is happening, times when I've felt lost and confused, but never angry at Father. I believe I chose this life and accepted the trials and blessings that came with it; how could I possibly be angry with God for that?

Whether or not a person is of my faith, I know not everyone has this same outlook. It can be an easy temptation to exclaim to the heavens with clinched fists, "Why are You doing this to me?" As hard as it is, we should train ourselves to instead ask, "What is it that You want me to learn from this?" Or, "How can I be a better person from having had this experience?"

One of my favorite Bible stories is found in John 9:1-3. It reads: "And as Jesus passed by, he saw a man which was blind from his birth. And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind? Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him."

There are many reasons I like these verses. One reason is that it can be a source of relief to parents. Sometimes parents feel a terrible guilt over their child's disability. This verse tells me that--unless it was through gross negligence, such as drug or alcohol abuse--a parent’s sins or actions did not cause their child to be born with a disability; as sad as it is, some people believe this. They are idiots; don’t listen to them.

The other reason I like these verses is found in the last verse: "...but that the works of God should be made manifest in him." We can't see God's purpose in all things. But one thing I am certain of, you and I were born on this earth for a reason. Sometimes, quite often in fact, the trials that you and I endure from having Sickle Cell Disease is a source of inspiration to other people.

I don't say this boast, but rather to acknowledge God's purpose. I know for certain that my life has touched others. The things I endure, how I endure it, and the way I've chosen to live my life has been an inspiration to many people. I think this is what the last part of that verse means. Your life can motivate people to do and be better.

I have survived many things that should have killed me and have been healed from many afflictions. The miracles in my life, and yours as well, are a manifestation of God's love and power. Though it may not bring much comfort when we are having a horrid pain crisis, the truth still remains that others see our strength and are made better by it.

Living with Sickle Cell Anemia, you and I will face a great number of trials. These are not punishments from our loving Heavenly Father, but are opportunities for us, and others, to emotionally and spiritually grow closer to Him. Yes, pain will come. Yes, complications will arise. But it's how you and I choose to weather these storms that will define who we are as a son or daughter of God. They will also help inspire others.

Don’t allow the pain in your life to put a wedge between you and God. Instead, allow that pain to be an instrument to build an unbreakable bond with your Creator. It will enrich your life, and the lives of others, beyond what words can convey.