And When Your Doctor Says..."I am sorry, but yes, you are dying..." Then what? By Michele DeMeo

From my experience, you just take a deep breath. In my case a bit shallow, but deeper than now and then "take it in". I cannot speak to everyone's experience. Whether personally hearing you are terminal or a loved one, like a child or spouse, your expience will be so different just because we are all individuals. Furthermore, loosing yourself is different then being left behind.

In many ways, overall, it is harder to be left.

For me, I have had and continue to have specific moments I have had to grieve a new loss... something functional with my body. Or getting used to a new level pain, that NEVER goes away topped with knowing I am slowing dying. Yet, the last "period of time" or issue you thought was the worse really wasn't.

You learn to privately cope.

Then something worse starts and new and/or different coping skills needed to be summoned up from within. Usually, they do, if open, patient, and receptive that 'this is just the way it is'. Embrace what is positive and the absolutely amazing elements and people in your life. Then top that!

Being in a continued state of disbelief, anger, sadness or anything negative after being told likely the worse news you will ever here is exactly time to do what you already should be going doing and trying to master: living. Do not stop. In some cases, it just might add years to otherwise months or less. It has with me. Is there a cost to it, yes, but minor.

You might wonder what I meant by that. Well, a few sentiments:

• While you summon up all of your inner strength, comes with it some additional exhaustion. This tiredness is above and beyond whatever your disease process is. However, in an odd way it elevates a sense of personal power and ability to overcome general obstacles.
• Regardless, of the amount of time stated you are being potentially left with, it does put a great emphasis on "I must do, finish, restore, fix, improve...x, y or z" to a heightened level. There are pros and cons to this. If not balanced, you are not living in the "here and now". No one really knows when your time will be truly up. So, if you begin to solely focus on all of the things you previously believed were imperative, you might miss out on more meaningful or important experiences that just might lift you total life journey.
• There is an additional level of stress that is added to your life, no matter how much perceived stress you already had. I say "perceived" because I have found personally and through discussions of others deemed terminal or spouses' of those that lost their loved ones, that we often see our immediate life a certain way. There is your version, the reality and the comfort level is somewhere in-between. This is important because if upon hearing some difficult news and you already feel you life is already not great, you are not going to be in the best position to "live" beyond that. Your current "place" on your "life-line" when now "time" is of the essence, should always be honored by the grace of your personal and/or professional best. Otherwise, you are undermining your ability to give as much as possible to world. We, I believe, owe that to others. If we all give our best most of the time, no matter the circumstances, can you just image what might be achievable?
• You may discover what was once imperative in your life becomes secondary. This can be mentally challenging shifting priorities, but often a necessity. After a while, your new norms become and sometimes feel more true and special than "what was", previously.
• You will discover, even faster, true loved ones. Grieve the loss of those that leave, but remind yourself they were never family to begin with or they would have stayed. Or leave those not healthy in your life. Move on. Try hard to not make the mistakes I have. I tried to maintain closeness with some that simply were never family to begin with. Someone, in that "circle" I am referring to once told me, concerning a professional matter, prior to my diagnosis 'like in all families, siblings or associates fight, but they come around with time'. This might be true for them with some, but they didn't extend that with me and I contributed to it. I own my part, even if they cannot or won't on their part- cannot make anyone "get something" beyond their ability. Try hard not waste your time on those that simply are not true friends. You are wasting time that could be spent on both actual loved ones and time to contribute more in the whole of life for more people than just a select few. That is core imperative in this world...serving the most possible. Not just in your circle, community or region, but if possible...well, to the ends of the magnificent earth!

Urging those that may be reading this to start to really "live" fully, is something that began to become a new priority for me once I heard "....I suspect, at best, you have 6-7 months more. It is important to connect with ALS center of excellence at Hershey Medical Center as soon as possible, I am sorry". I said nothing back, nor on the ride home, at the time. I was processing something I had mainly already had known for about 2 years prior that I kept private from EVERYONE, except the CEO of Memorial Hospital. I "slipped" one day, in the doorway of her office as I replied back to her as she kindly said hello to me as I was waiting for my immediate superior. She motioned for me to come in and I was unaware, briefly, I was rubbing my forearm. I noticed her silent, but inquisitive "eye" looking/watching me. I stated, a few months before I built up the courage to go to my then physician- "I am sorry, something is really wrong...my arms hurt badly and I feel weak, no big deal" and with that my time to go into my boss's office arrived. I just wished her a good day and proceeded into his office. Nothing was said there after until I was hospitalized in ICU in "acute respiratory failure" at Holy Spirit Hospital with a collage of specialists a few from neurology, infection control, pulmonology, etc. All, highly speculating what I already figured out and knew; "Yes, we are all nearly in agreement...she likely has ALS. She should be sent to Johns Hopkins and we should likely vent her now...or we will loose her." I motioned to my then wife "no". I knew I would remain on it and did not want to be "trapped" in my own body. I was prepared to just die, when it was naturally time. I KNEW to my bones I could handle whatever might next. Just not hooked up to a vent-for me, anyway. Pain, yes. Slow or fast paralysis, yes. Deeply difficult breathing, yes. But tethered to a bed or chair to a vent a loud "NO".

Would I have avoid nearly 8 years of physical agony and such, likely. However, I would have never had the out-weighted scale of immensely and surprising experiences thereafter, even if coupled with some pain.

Yes, somehow I turned a 6-7 month diagnosis of end-stage ALS into now 8 years (maybe longer if you include my initial time of symtomology). How?

These are a few of the ways that help me and I believe to help extend my life:

• A deep belief in the power of self-determination.
• Not surrending everything everyone says is a must. Use common sense, your own self awareness and basic logic.
• Keep a sense of humor.
• Be realistic in your bodily expectations. You might surpass some things, but you must honor your current state by balancing complete surrender to what was you absolute best. Your level of ability will change and continuely, likely, unless you have a potentially non-terminal diagnosis or one that is could be slightly prolonged. To maximize your life, you must make a few compromises. That does not mean complete loss. If you surrender what needs to be let go, it cannot be "stolen" from you. You are left in the power position and it is powerful. Feeling defeat is crippling, but coming to terms with "x" and letting whatever the "it" is go, is liberating. Enough so for you to continue to live fully or as fully as possible in the remaining areas of your life. Until new decisions must be made or dealt with proactively or peacefully.

You get just one chance to leave a mark on this earth. Try to ensure it is one you are as proud of as possible, even forgiving yourself for mistakes...just MOVE ON. Time is never on your side whether you have been told you are extremely ill and/or terminally ill or not. We all die at some point. Some of us just have the luxury of a constant bodily reminder of just how true it is. A means to help to generate enough energy within us to try a bit harder to do more, better and bigger than if we wake each day without the slightest notion it could be your last.

Try not to let spoken words define, limit, stifle, or defeat you. Allow this short article of limited scope to be used as a reminder to take a better look at your current life and "self". Examine all aspects of your life and shift now what best suits your circumstances so if the "unimaginable" occurs, you are already really living your fullest and best self with the right people. Imagine more...then execute it, no matter what. Is mediocre really ok with you? That is how most of us live. Truly, ask yourself the following: 'Am I fully living my potential?', 'How can I improve my life and those I love and BEYOND?', and 'What really is possible?'

Your abilities remain boundless, regardless of any stop-clock button pressed randomly by someone. Live beyond what might be possible to ensure your life leaves pieces bigger then you ever dreamed you could be possibly be apart of. Having a shelf-life is a very powerful motivator. Use it to your advantage. Try not to settle for sadness that is a necessary feeling. Yes, grieve, but actively live through it. It is in the time and space, if you allow it, where you can exploit your innate skills and loves and really flourish.

When the day or time comes when you end is near, trust me you will not just know it, but feel a sense of "well, I truly did my best...flaws and all".